How to Value Self-Love and Sexual Pleasure when Living with a Disability: Arthritis Life Podcast Episode 11

Cheryl and Dr. Sakshi Tickoo, a Mumbai-based Occupational Therapist who founded “Sex, Love and OT” discuss how people with disabilities can successfully navigate sexual relationships and be empowered to value their own self-love and sexual pleasure.

Dr. Sakshi Tickoo (she/her/hers) is a Mumbai-based Occupational Therapist, Personal Counselor and Student Mentor specializing in the fields of Sexuality; Mental Health – Wellness and Rehabilitation. She has served a diverse group of people through home healthcare, telehealth, and school-based settings. She is also the founder and owner of Sex, Love, And OT and The OT Shop.

Sex, Love, and OT is an inclusive and comprehensive platform educating and serving healthcare providers and clients who need tools and resources to advocate for sexual rights and liberation through education, centering pleasure, and freedom of occupational engagement in sexuality towards holistic wellness.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources. 

Links discussed in this episode:

• Sakshi’s social links:
  • Website: sexloveandot.com / the-ot-shop.myshopify.com
  • Instagram: @sex.love.andot / @the_otshop
  • Facebook: @SexLoveAndOT / @TheOTShop
• Free Handout: Cheryl’s Master Checklist for Managing RA
• Cheryl’s Facebook group: Arthritis Life Podcast, Practical Tips & Positive, Realistic Support
• This episode is brought to you by the Rheumatoid Arthritis Roadmap, your guide to living a full life with RA. It’s an intensive online education and support program Cheryl created to empower people with the tools to confidently manage their social, emotional and physical life with rheumatoid arthritis.
• Pie chart for time management / scheduling
• Promoting sexiness for disability hashtag on social media: #DisabledPeopleAreHot
• The Five Love Languages Book
• Dr. John Gottman marriage researcher – “Four Horsemen” for marriage

Medical disclaimer: All content found on the Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode breakdown:

• 1:00 – Dr. Tickoo’s story: why she became an occupational therapist  
• 3:25 – How Dr. Tickoo discovered the niche of sex and relationships 
• 7:46 – How an occupational therapist can facilitate a client’s engagement in sex and relationships
• 12:19- How to gain occupational therapy clinical knowledge of how to address sex outside of your textbooks 
• 14:09 – The barriers for people with chronic illnesses face for sexual participation and intimacy 
• 18:06 – Advice on how to feel sexy while living with chronic illness 
• 22:26 –   Giving yourself permission to enjoy sex 
• 26:15 – How sex is taboo in India and what Dr. Tickoo does to be sex positive
• 33:45 – The difference between physical & emotional intimacy
• 36:48 – Communication about intimacy with your partner and how to handle power dynamics 
• 42:00 – The importance of knowing your partner’s love language 
• 46:00– How adults have sensory regulation needs and how chronic pain affects sensory processing
• 51:00 – When to mention that you have a chronic condition or disability when dating
• 54:51- Tips & tricks for intimacy with your partner when you have arthritis: scheduling, connection, experimentation, positioning aids and more
• 1:06:45 – The importance of client education about the basics of their condition
• 1:08:45 – How to choose a good lubricant
• 1:11:00 – Recommended toys
• 1:13:00 – “Everything can be sexy [including aids] as long as you think it’s sexy.”
• 1:13:55 – What is pleasure mapping and how can it help?
• 1:17:00   – Concluding thoughts

Full Transcript:

[00:00:00] Cheryl:
[Introductory note]  

Hi there! I’m so excited to welcome you to The Arthritis Life podcast where we share arthritis life stories and tips for thriving with autoimmune arthritis. My name is Cheryl Crow and I am passionate about helping people navigate real life with arthritis beyond joint pain. I’ve been living with rheumatoid arthritis for 20 years and I’m also a mom, occupational therapist, video creator, support group leader, and I created the Rheum to THRIVE self-management program. 

I am so excited to help you live a more empowered life with arthritis. We’re going to cover everything from kitchen life hacks, to navigating the healthcare system, to coping with friends who just don’t get it. Seriously, no topic is going to be off limits on this podcast. My interviewees and I share our honest stories of how chronic illness affects our lives. This includes discussions about mental health, sex, shame, pregnancy, body image, advocacy, self-acceptance, and so much more. You’ll hear stories from all ends of the spectrum from a person who’s living in medicated remission from psoriatic arthritis to somebody living with severe mobility restrictions and severe pain from rheumatoid arthritis. 

You’ll hear how people manage their conditions in different ways like medications, mindfulness, movement, social support, work accommodations, and so much more. You’ll also hear from rheumatology experts who just get it. We’ll dive deep into the science behind chronic pain and what’s the latest evidence for lifestyle changes that can help you thrive with arthritis, including exercise, sleep, nutrition, stress reduction, and more. This is your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.    

Hi, everybody. On today’s episode, I get to talk to Dr. Sakshi Tickoo, who is from India, and she is an expert in sex, love, and occupational therapy. So, we talk a lot about how people with disabilities can experience pleasure and intimacy while still coping with whatever symptoms that they’re having from their disability. And it actually goes so much deeper than that. We talk about how to love yourself and how to validate and prioritize your own pleasure, and I just loved talking to her and I can’t wait to share this episode with you. So, let’s get started.

Hi, my name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years, and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks to how to respond when people say, “You don’t look sick.” Stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness – no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started.

I’m so excited to have Dr. Tickoo here today. Can you tell us a little bit about yourself, like where you live and why you became an occupational therapist? 

[00:03:26] Dr. Tickoo:
Okay. I’ll answer the first question and then I’ll get back to why I became an occupational therapist. Yeah, and it’s a fun story, especially for me. So, I’m 23-years-old, cisgender female. I identify as bisexual, and I was born and raised in Mumbai. I have completed my bachelor’s in occupational therapy from KM Hospital, and I graduated earlier last year, which was in February, 2019. And since then, I have been working in school-based telehealth and home healthcare setups. Now, going back to the first part, why I got into occupational therapy. So, I really had no idea actually. I had to, I wanted to be a gynecologist, but then as I am a person who, as a person with disabilities and a person who is surviving through a lot of chronic illnesses, I did not think that was the profession I could have survived or I could have done justice to. 

And that is why, that is when I actually shifted from physiotherapy and progressed to occupational therapy, that all the three options were available to me so that I get to choose something that’s different and I still get to pursue my education in serving people because that was my idea. I was really fascinated with the entire anatomy. So, that was my idea of getting into it. It was only later, towards the final year on my internship with Bachelor’s in Occupational Therapy that I fell madly in love with occupational therapy. So, that is how the journey has been.

[00:05:04] Cheryl:
Well, and something that fascinates me about occupational therapy in general is that you can take like whatever passion you have and then figure out a way to, you know, serve that passion. Like, for me, it initially was children with neurodiversity, like on the autism spectrum or different brain wiring. And then, it became arthritis through my experiences as a patient. 

And so, it’s just such a fun broad field that you can then narrow down your interest in. So, it sounds like your own personal experiences kind of led you to specializing in sex and love and relationships. But I would love to hear more about how you got into this work because it is considered like a niche area in OT. It’s not one that everyone’s exposed to.

[00:05:52] Dr. Tickoo:
So, like, I have a problem in a good way. In a good way, but I still have a problem. I want to explore things that have not been done before so that I get enough time working through it, I get time to research about it. I can put my — it’s something that I, like, there has to be like a Dr Sakshi homage to it. If I do not get to do that, or if I have to follow certain set of rules all the time, I get bored really easily and I will leave that thing. That’s my biggest problem with anything life.

[00:06:20] Cheryl:
I think that seems like a superpower, that you don’t wanna take the status quo and you wanna put your own stamp on things. I’m gonna reframe that right now. 

[00:06:32] Dr. Tickoo:
So, I’m quoting my mother and she literally thinks that — and she pointed it out very rightly. So, it started when I was introduced to psychology in second year of my occupational therapy education. And I was mesmerized by what Freud has to say about psychosexual development. Now I know it’s very controversial. People do not like Freud very much, but there’s this theory of psychosexual development that was so beautifully put and it still makes me wonder if we are talking about — and that was also the time when we were still learning about occupational science. 

So, if you are talking about science and sexuality, would it not be one of the occupation that the person would be getting into? So, which is what led me to actually scan through Pedretti’s. And we were referring the Pedretti’s textbook during that, like, during the first two years of our education. And I saw a beautiful chapter written as sexual dysfunctions and how we are going to treat it in occupational therapy, and the entire five to six stages had these beautiful pictures. It was talking about what positions to take. But nowhere did they actually mention what an occupational therapist would be doing.

[00:07:50] Cheryl:
Theory, but not practice, it sounds like. 

[00:07:53] Dr. Tickoo:
Nothing. Nothing at all. Nothing at all. If you go through any other chapter in the textbook, any other chapter. And I love Pedretti’s. And if you go through any other chapter in the textbook, you have so much of content. I know I have went back to the textbook just to treat my patient again, and it has been so informational, but when it came to sexuality, I was blank. And I was like, okay, toys. Okay, I need to be going through that. Okay, I need to be doing some modifications. But what kind of modifications? You are not even using the word activity analysis over there, whereas you use that word every other time, every second time in every other chapter. And we did not use those words there. 

[00:08:36] Cheryl:
So, yeah, you definitely, it sounds like you identified a problem that there wasn’t enough information. Even in — or the way I pronounce it is Pedretti’s. I don’t know if everyone pronounces it differently, but that’s like our seminal textbook for occupational therapy. So, yeah, if it’s not covered well there, then it’s a problem because that’s kind of like the foundational, one of the foundational takes along with the OT practice framework, which I do believe the fourth version of the OT practice framework does have some more detail about sexual identity and sexual activity. But, yeah. 

So, you were fascinated by the fact that there wasn’t a lot of — or let me try to paraphrase. It sounds like you were fascinated and kind of irritated in a way that you turned into productivity. You were productively irritated at the fact that they — I’m sorry to project, but it’s so similar to me — to be like because I was, the reason I did Arthritis Life is I was irritated by the lack of resources for people with arthritis. It’s particularly inflammatory arthritis, not osteo wear and tear, the kind that you can get when you’re younger and yeah, that has fatigue and everything. 

So, yeah, I think noticing something that frustrates you or irritates you and that you think isn’t good enough is a great motivator if you’re the kind of person that likes to solve problems, which sounds like you are. 

[00:09:54] Dr. Tickoo:
See, you solved the entire thing.

[00:09:56] Cheryl:
Oh, yay. So, then how did you learn more? How did you kind of get to where you are now? Not to say that you’re like, no, everyone’s always a work in progress. We’re always learning, but what are some of the things that helped you if that textbook wasn’t the most helpful? What did help you learn more?

[00:10:13] Dr. Tickoo:
I say this as a pro and con. We have a liberty of being with our clients, so we get an early on exposure. We have direct hands-on expertise and exposure with our clients, obviously supervised. But then, towards the end, like by the time you get to your final year and your internship, you are all on your own and they expect you to know things. And now, suddenly, you are like from a cocoon, like from a rolly-shielded shell, you are directly put in front of the patient and asked to treat everything. And then, you need to get into the whole holistic idea of how this needs to be done and how it’s supposed to be done. 

And then, when you start working with the interdisciplinary team, you do realize that they are not mentioning certain things or like when you actually perform standardized assessments on them, you do realize, like, you do find certain sections which talk about intimacy, which talk about fine motor dexterity or things like that. And the moment you go on and on. And in generally, like, when I used to ask them, this is also the area that we could help you with. If you are interested, you can come to us. There would be nurses and there will be a surgeon who can help you out with this. And we’ll always be available here. 

And the first time that I heard this back from — so I was in a community-based setup then, and that was my first client in my final year that I had asked them that if you are experiencing — a fairly young woman, identified as a woman. And I asked her if this is something that has been hampering with your intimate life as well, apart from some ergonomic modifications. I also suggested that if this is the area that is concerning you, I can definitely help you with certain things that you could do better. And I did not start with bombarding her with information that I can do this and I can do that. I just gave her resources of people she could go to in case she also wants help in that area. 

And she very randomly, she said that, “You are the only person who has asked me this. And I have been coming to this hospital for two months now and nobody cared about it.” And this thing, I took this thing and I’ve continued it for like that one and a half year of my college. And the experience has been amazing. The response has been amazing and I cannot believe how confident it makes you. Like, the first time you’ve become so awkward. And you so awkwardly frame, you so awkwardly frame it because you do not know if your client is going to get angry, because how dare she ask me about this. 

But then, the response was very nice. And some of them actually say that we may not be comfortable or we will prefer, we will prefer some elder therapist, or we do not want to talk about it, we are not experiencing anything of that sort. And so, that’s completely fine. We’re still here. If at any point if you think that you’ll need us, we’ll still be here.

[00:13:01] Cheryl:
And I think, yeah, I think so many therapists, occupational therapists or others, they, like you said, they feel this initial awkwardness about bringing it up. But like you said, it could literally just be a question, a simple question of, you know, not everyone knows, but sexual activity and intimacy is something that occupational therapy can help with. So, if that’s something that you wanna discuss further, I’m happy to talk to you about that. It doesn’t have to be like, hi, I’m gonna give you a 10 minute spiel on sex and why it’s great. Like, it doesn’t, it could just be a question. And the fact that no one else, like you said, has asked, that makes it so important for us too. I think there’s so many misconceptions. 

I know I did a skilled nursing internship where it was people who are older adults, quote unquote, in other words, ‘elderly’ people. And a lot of times people assume, oh, well, they’re quote unquote, they’re ‘old’. They’re not having sex. Well, that’s not true. If you have a hip replacement, you need to know how to engage in sexual activity, if that’s what they’re, if it’s important to them. And I did, I will say spinal cord injury seems to be the one area that everyone for sure mentions or talks about. And I did have an internship in spinal cord. 

But what I think is funny is I think that there’s kind of these layers of like intersectionality, right? Because mostly men get spinal cord injuries. And so, interestingly, when it affects men, everyone talks about it. But what about — anyway, that’s a little soapbox. But you’re saying the setting that you’ve been, you said community-based, is that an outpatient community-based or community-based like hospital?

[00:14:38] Dr. Tickoo:
So, we usually have like in-situ within the hospital. So, you would need not go outside, but it’s like an amalgamation of about four or five hospitals together with a lot of specialties. So, a lot of specialties together put together in around the radius of one to two kilometers. So, it’s like a huge hospital, a number of settings, and then they just put you in there like that. Yeah, so to answer your question, the reason that — okay, so the reason, the knowledge or like I have that kind of an experience first because I asked this question in every single setting of clinical rotation that I went through.

Except pediatrics, which I’ll come at later, but then every single setting. And to be very honest, I did not — I had enough information because I think by the time OT had taught me that you’ve gotta be creative and you need to help, you need to ask the client to help you guide them. And that is exactly what was happening throughout my experience or throughout my education, or even in practice right now. They help me so much and they tell me what do they want. So, I don’t have to actually go ahead and search things. They have done half of my homework for me. I just tell them what could be best for them.

[00:15:56] Cheryl:
No, that’s so perfect. I think even the AOTA, the American Occupational Therapy Association, on their front page of their website, it says — or if you go to ‘About OT’, it says, “We don’t ask what’s the matter with you. We ask what matters to you.” That’s such a great, yeah, and I think as, and I think the majority of people listening to this podcast are people with arthritis, living with arthritis. But there was also quite a few occupational therapists listening too. So, hopefully this is interesting to both camps. But I am curious. Now, you started your own company, ‘Sex, Love and OT’, doing education and providing tools and advocating for people’s sexual pleasure and rights, and there’s just so many things I wanna ask you about that. Let’s first start with what are some of the barriers that people with disabilities in general and chronic pain specifically, what are some of the barriers people in those populations have with sexual participation and intimacy?

[00:16:53] Dr. Tickoo:
I think it differs from what kind of diagnosis you have or what it is, but then most of the times it’s the fact that something’s really wrong with them. And now — and the fact that they have a disability right now; they suddenly shouldn’t be thinking about anything sexual or they no longer are this person who can be perceived as sexy. This has been one of the major things. Forget pain, forget everything else. I think this has been one primary thing. “I haven’t thought about that.” I get this response all the time. “I haven’t thought about that. Is it okay to think about it?” And I’m like, you tell me, is it okay or not? 

Because I cannot tell you. I’m just asking if this is what you’ve considered, or how are you trying to keep yourself happy or content, or how are you trying to stay in touch with yourself, with your body? How are you trying to do that? And they always say that we no longer perceive ourselves as a sexy being, or can, or should we be having sex? Is it safe? Is it not going to exaggerate our disability or any of the symptomatic things at the moment? Is it going to aaggravate it in some way? I’m like, where are they getting this kind of information? Where? Who is saying all these kinds of things?

[00:18:08] Cheryl:
I think it’s the culture, right? Like, how often are you — and obviously, so you’re in India, I’m in the United States, but the representation of people with disabilities is often, in the media, which is where a lot of, we get a lot of our ideas of what’s, quote unquote, what’s ‘normal’ and what’s ‘expected’ is there’s a lot of these, what do they call it, the savior narratives where the person with a disability is sad and they’re unhappy, and then the able-bodied person comes and saves them and makes them more normal, and now they’re happy. And it’s — or the doctor comes in and it fixes Timmy’s legs and now Timmy can walk again and everyone’s happy. But there’s just not a lot of representation, I think. I think that’s one of the reasons. 

It’s very complicated, like you said, if you don’t see people in a wider media, someone with a congenital limb difference, I think there’s a lot more. I’m 38, so when I grew up there was, like, not even — there was so few representation, so little representation there. They started, it was like they were starting to have a political correctness around showing people in wheelchairs, which is a good, which was a start, but there it was nothing else. It was like just, okay, there’s some people in wheelchairs; anyway, everyone else. Like, it wasn’t very deep. But now, like I’ve seen for Target or other like giant companies, they’ll have someone with a congenital limb difference where they have one whole arm and one arm that’s not developed below the elbow or something like that. 

And so, hopefully — I’m rambling, but hopefully, through time that’s becoming — and social media, there is a campaign I saw. Something like, people with disabilities are sexy. Do you know what I’m talking about? I forget what it’s called, the hashtag, but I’ll include it. I’ll find it and include it in the comments because that is so empowering to people to see pictures and stories of others. So, sorry. I didn’t mean to ruin your train of thought. So, you’re talking about — you’re so right. It’s not just the physical. It’s not, “Oh, I’m in pain, therefore I can’t have sex today.” It’s so deep. It’s about, like, my identity as like a sexual being is so altered by having a disability potentially. But what are some of the things then that — what are some ways that you’ve worked on that with people or advice you have for people who are struggling to not feel sexy ’cause of their condition?

[00:20:34] Dr. Tickoo:
Before I go into it, I usually, whenever I meet my clients, or I have met my clients, I usually talk about this concept where we define this dysfunction with D-Y-S, or disfunction with D-I-S, where the only difference is are you trying to diss your functions or is it actually a dysfunction? 

[00:20:56] Cheryl:
Oh, I love that. 

[00:21:00] Dr. Tickoo:
That was one of the word plays that I have with my clients who do understand English. But if not, then I have the same in my local vernacular that is Hindi. So, every time we have this conversation, I ask them that, you know, what is it, what do you think it actually is? And then, I walk them through it. And some of the symptoms, it usually falls under the area of dysfunction. Most of the times it’s that D-I-S function. So, the moment you start asking them to talk about it, have you thought about it? Or now that today you will be doing, while you will be stretching out a little bit, maybe you try to add a little bit of moisturizer later on, or you just give yourself a very slight massage, which does not contraindicate with your condition right now. But then, in a way that does give you a lot of tactile experience and a sensory experience as well. But then, it helps you get back in touch with your body. It does not mean you go back today and let’s get it, let’s get it done. Let’s have sex tonight. But no, get in touch with yourself. Have you just tried to dress up sexy? Or have you tried to put on your makeup today? Would you like that? Or have you tried to make your hair today? Are you going to ditch your pajamas today and wear little shorts? Anything. 

It’s gotta be that basic. And sometimes it’s such a huge motivator, but the moment you ask them to do something for themselves, they stop. And then, that’s like half work done. You have given them an option that suits them the best. Now, they know what they want. I can actually guide them and when to do it. So, if they usually have a medication time. So, when are they going to do it? if they are busy throughout the day or even so this is a very simple activity that I advise them, just make a pie chart and try a time management one, right? So, just find out the portions in your day and actually point out to me where you are spending time with yourself and you are thinking about yourself only. There’s nothing else in the world. It’s just you and your body, and any other experience that you wish to feel, which makes you happy, which makes you feel pleasurable, which makes you feel comfortable in your own skin, anything. And that works. Like, I don’t know, just add anything that works like magic for them because nobody has actually asked them to get back to their partner because that’s the crap thing that they hear all the time. That’s one thing they are made feel guilty about that it is them who is not able to do it, or they have this patient, suddenly patient kind of role. 

But even if they are with a partner, I do not mind that. But I always, always first emphasize that they should get in touch with themselves first before they wanna go ahead and talk to their partner about anything else. Because if you do not know about your own body, you cannot ever communicate about the same with your partner. And they’ll be as clueless as you. And then, you’ll feel and end up — and then, you end up feeling bad and thinking that you are the problem. And I’ll suddenly you have done what I was talking about, D-I-S function. You are dissing your own functions and you’ve made it look like a dysfunction. But when it’s really not, when it’s really not.

[00:24:27] Cheryl:
That’s so beautiful. I think also spending time on yourself and focusing on your own pleasure. It covertly or implicitly communicates to yourself how worthy you are. And I think a lot of people with disabilities that I’ve talked to have ended up feeling that they kind of owe it to their partner. Sex or intimacy is something that they do for their partner so their partner feels good. And I have to say, I grew up in a different, in an era in the eighties and nineties where it was basically like sex is something — and I’m straight, so sex is something, the message I got is sex is something the boys like, and girls either have the power to give it to them or not. It was, there was nothing about my own pleasure in it. 

It took me a really long time, and it only was like a few really, wonderful boyfriends that were like, no, I actually want you to — I’m like, “No, I’m, fine, I’m fine. This is fine. I don’t want you to worry about me.” They’re like, no. They were evolved for that era. They’re like, no, I want you to, like, have fun too. I’m like, “Oh, okay. I guess I can.” But I had to give myself permission. I had to see myself as valid, and this is even before I had rheumatoid arthritis, But giving yourself permission, just as a human being, whether you have a disability or not. So, I love, I’ve never thought of that in those terms. I think that’s beautiful. What are some of the responses you get from people? I’m curious.

[00:25:52] Dr. Tickoo:
Oh, they always love it. They always love it. Some of them think that it’s too nerdy. Some of them who actually, the ones who know what I’m talking about and those who — so like when you’re in India, you do not usually get a lot of people who are very, very educated. But then, now that I’ve started my practice, apart from the government hospital that I was initially studying in, now it’s much more approachable to people who do understand English or who have the basic understanding of how to access Internet or how to book an appointment. So, they usually get that. And they’re like, oh, this is nerdy, but it’s cool in a way. So, I’m like, that’s me.

[00:26:33] Cheryl:
Yeah. I don’t know all of the norms in the area of India that you’re at, but I know that in some parts of the world, there is not a lot of sex education for youth. 

[00:26:46] Dr. Tickoo:
Not a lot of parts. It’s nowhere in India. 

[00:26:49] Cheryl:
No, I know. Yeah, you’re right. There’s some super liberal place, maybe like in San Francisco. They’re giving good, I’ve heard of some really good, like, sex positive — oh no, it’s like the Netherlands, right? It’s like certain countries in Europe are doing a really good job normalizing it, like, from a young age. But yeah, I just remember mine was so — and I’m sorry for those listening who also listen to the other podcasts that I already talked about this, but it was so fear-based. I was so afraid. Like, I was afraid of getting an STD, I was afraid of getting a pregnant. There was nothing about it that was like, the education that I got that was not, like, this is something that people do when they love each other and it’s like a way to feel close to your partner and it feel good. It was like, ‘No, this is bad, bad, bad. Bad people do this. If you do this, you’re gonna die’. 

And so, I was, it took me a long time to give myself permission to have pleasure basically, for many reasons. And I was not one of those kids that most kids are like, “It won’t happen to me.” No, I was not. I was like, it will happen to me. That all ‘worked’, quote unquote, it had the intended effect it was supposed to be, which just scared me away from ever doing any drugs or having sex, which is so it obviously, like, that’s adaptive in some ways. Like, I didn’t die in a drunk driving accident that I was causing or anything like that. But the, it was an exaggerated — I have anxiety disorder and this is like a example of that. It was an exaggerated response to a threat response to it. But they, but the threat was communicated as way worse than it actually was. Anyway.

[00:28:26] Dr. Tickoo:
No, I get it. I completely get it. And I have this question asked every time, and they do bring up what it is like in India and to do something of this sort or to even just say ‘sex’, the word ‘sex’. If you say that, oh, my God. People would be looking at you as if you’re a criminal and they always ask me, how did you grow up? Or your household would’ve been really cool. Your parents, they must have been really cool. And they don’t know actually it’s the opposite. And they still, and yeah, they still believe that I am not supposed to kiss somebody or try to be in relation with somebody else beyond marriage. That’s not allowed. It’s still not allowed, just because I practice this and just because I have advocated about it enough in my home. There are certain cultural beliefs that my parents have. They have some values that they try to inculcate in their children, and that’s something that they have learned. 

So, I do not have any right to say that you are one of those people who have ruined it for our generation. I cannot be saying that. At this point in time, I can confidently talk about sex with my parents. So, after this two years of advocacy, and it started with home. It started with home. I had to tell them that this is the area that I’m interested in. There’s not much done, but then I’m trying to pursue it in whatever way I can. I’m not sure what will happen, but I’ll try. We can say condom, we can say periods out loud. We can say that we are having cramps. We can talk about masturbation. We can say the word pleasure. We can talk about consent. We can talk about boundaries. And none of this, an Indian household isn’t like that, isn’t like that. You are very close with your family. You do not leave them. You stay with them as long as you can. If you are not moving out or anything, you stay with them. That is how it is that’s how the culture here is. 

But despite that, there are certain things that you cannot change about somebody’s perception. So, there are certain, like I said, there are certain things that they do not agree with, but they do not have the right to stop me from it. And they understand what I’m trying to go ahead with. It does not, it’s not in concordance with whatever they believe, but they cannot stop me from doing what I want to or stop because they understand that some of them are actually suffering. Some of them actually cannot do it. Most of the people are not getting the kind of education that they should have had, and that is how it is. Nobody talks about it. Some people are actually suffering. So, I think they are trying to make the peace with it, but then it all comes with you. It all comes with you.

[00:31:12] Cheryl:
Yeah. I am such a people pleaser that I think it would be hard to know that maybe you’re not taking the path of least resistance for your parents. Like, that you’re, that the path that would be easiest for your parents, but you’re taking a path that, like, there are so few things that everyone — I shouldn’t say everyone — but most people in their lifetimes are going to experience. There’s so few things we can say and one of them is most people experience some amount of intimacy with another human being, if that’s a value to them. I know there’s some that are asexual and that’s not what they value or want, but their majority of people will have in their lifetime if they wanted some sort of intimate relationship. So, you’re able to, if you focus on this area, you’re able to have such a large impact, you know? But, yeah, it’s ironic that it’s such a taboo to talk about, given that it’s like everyone’s doing it. Have you only had sex twice? I used to think that. Oh, my parents have had — 

[00:32:21] Dr. Tickoo:
Exactly, yeah. They get so excited about — oh, my God. It’s actually celebrated here that whenever a girl starts menstruating or if somebody obviously gets pregnant. So, it’s a huge thing. They actually celebrate it. They think that it’s a new phase in their life. And I’m like, what are you celebrating? They just had sex.

[00:32:42] Cheryl:
Or we should celebrate all of it, right? Or none of it. Don’t just pick and choose. Yeah. I shouldn’t say they, I’m not trying to talk about people’s cultures being, wrong or right. It’s just, it’s funny that across it’s like a taboo across many cultures, right? And I, similar to you, I loved studying psychology and I minored in anthropology in my bachelor’s, and then I got my master’s in OT. But yeah, there’s a few things that humans, I remember learning, there’s a few things that humans don’t habituate to, and it’s sex and pain are two things we don’t really habituate to very much. And there’s a few things that are like taboos in all culture — not all cultures, but there’s different kinds of taboos that are common across cultures. And one of them is sex.

[00:33:27] Dr. Tickoo:
I guess, I think while I actually started talking to people, and now that I speak to people around the world, I get to realize that it’s not the culture. We have, we have decided to scapegoat cultures or we have decided to create something about them while when we actually go back, I don’t think Indian culture ever said that — it can be different for other cultures. It can definitely, because I see some of the pastors saying this is a sin and masturbation is a sin. But I would, personally say that when they say that India is very conservative culture, I’m like, we invented Kama Sutra. What are you talking about? 

[00:34:06] Cheryl:
I was just thinking about that. Yeah.

[00:34:09] Dr. Tickoo:
We invented it. We are saying you can have group sex. We are saying that due to — homosexuality isn’t a sin. We are saying that you can experiment with sex. We are talking about intimacy. We are doing what Masters and Johnson did by the research of sensate focus, we already did that in Kama Sutra. What are you guys doing? So, most of the times it’s not the culture, but the way people have decided to perceive the culture. It was supposed to be something more delicate. It was supposed to be something more sacred, something that has meaning. And it’s like that. So, for while I was researching back the cultural narrative of sexuality in India, we considered sex work valid. They say that it’s actually a noble job. And then, there would be this person who has the capability and who has the expertise and the skills to create that kind of an arousal with some, for some person, which in itself was considered a good skill. You can do it just the purpose of surrogacy. If maybe, if somebody cannot do it, you can do it for the purpose of surrogacy, and that’s a valid profession. You can just do it for your own pleasure. And it says that. It says that you can do it for your own pleasure. So, I don’t know what happened and where is our culture saying that you cannot be doing this the way that you’ve perceived it, in a way that you know this is not supposed to be done for fun. And that’s all.

[00:35:43] Cheryl:
It’s so fascinating. I’m sure that there’s books and that can be consulted about how did things evolve. But I’m thinking about more — ’cause I would love to talk about this all day actually, because it’s really fascinating. Yeah. Later. That’ll be offline. But in general, you mentioned, so I’m trying to think back to like tips and tricks, ’cause I know that’s what some people are looking for, especially people with arthritis who ot’s not just the physical pain, but it can also be, like you talked about your identity as maybe less than, and so one it’s of the things that I remember learning a little bit about. But I would love to hear your opinion on is what’s the difference between like intimacy, versus sexual activity. Like, intimacy meaning in the sense of an intimate relationship between two people on an emotional level. Does that make sense? 

[00:36:40] Dr. Tickoo:
Okay. So, sometimes it cannot be emotional. You can keep the emotion outside of it and it can still be intimate. So, intimate is just the — oh, yeah.

[00:36:48] Cheryl:
Oh, good. No, this is good. I’m literally curious. So, yes. Go on.

[00:36:52] Dr. Tickoo:
So, this is how everything, everything has been redefined, okay. So, we are not staying back on whatever the dictionary says. So, take it this way. Anybody has a casual encounter with somebody. How can you say that they were not intimate? They were; they completely were. So, the whole idea of intimacy is developing closeness with somebody. And it does not have to be on an emotional level. It can be just on a sensory level. Anything that keeps you content or is fulfilling enough for you. And that is how it is. More than it going deep into feelings and everything else, it’s just the idea of having a more fulfilling multisensory experience, just to put it more in more OT tone.

[00:37:40] Cheryl:
Yeah, I love that. Yeah. That’s totally a good education for me because yeah, I had learned, or maybe I mislearned, but that, yeah, intimacy is the emotional part and sex or the activities is like the physical part. I know that’s so reductive is, I guess. So, I know I personally am not capable of having a physically intimate relationship that doesn’t have an emotional component just ’cause of who I am as like a human. But I didn’t know if everyone else is like that too. 

[00:38:08] Dr. Tickoo:
But that, again, that again is one of the kind of sexuality expression, which is completely different where you do require some amount of emotional intimacy. Why do we not leave it emotional, but we do say an emotional intimacy. So, that is when what you were trying to say right now, that intimacy is supposed to be emotional, so you are not just having a multisensory experience, but it also, on a psychological level, does stimulate some kind of feeling for you, some kind of thought process for you, some kind of arousal or like we say, desire for you. So, that is how that is how it, it is different intimacy in that way.

[00:38:50] Cheryl:
[Intermission begins]
Hi, everybody. I’m interrupting really quickly to let you know that the wait list is now open for the Rheumatoid Arthritis Roadmap: Your Guide For A Full Life with RA. So, this is actually the same program that used to be called The Beginner’s Guide to Life with Rheumatoid Arthritis. But I updated it with some pretty major changes and I can’t wait to share more in the coming weeks.
[Intermission ends]

When I was talking to some of my friends who have rheumatoid arthritis specifically, just to pull out a diagnosis out of a hat, that a lot of the conversation kept coming back to the communication between you and your partner and how vital that is and how important that is. But one of the things that can make communication difficult can be the power dynamics in an established, let’s say you’re in an established, like, monogamous relationship. Sometimes there’s like a feeling of, okay, well, we try not to keep score, but sometimes it’s kinda okay, well he did this favor for me, or I did this favor for him or her. Do you have any tips on just any overall communication, but also navigating some of those potentially power dynamics in the relationship where maybe one person’s able-bodied than one who has a disability? That’s a big question.

[00:40:07] Dr. Tickoo:
So, I’ll discuss it. No. Yeah, it’s amazing. I love communication. I’m bad at it, but I love communication. But okay. So, I’ll do it for both the things and while you are trying to date and when you already in a relationship, I’ll explore both of them. I’ll start with while you are in a relationship with a person. So, there’s this very underrated skill of the five love languages. I think every — I think you must be aware of it, are you?

[00:40:40] Cheryl:
Yes. Yeah. But just I’ll put a link in the show notes for people who aren’t, yeah.

[00:40:43] Dr. Tickoo:
Yes. Okay. So, and that’s the most beautiful thing that you could ever do with your partner or anybody else because you are trying to communicate how you feel in the moment, not just through one act, but through various acts, which is very important because if you won’t have pancakes for breakfast every single day, why are you trying to love your partner in only one way? So, you need to mix it up. Just because you are very comfortable with your partner does not mean that you take them for granted. 

Or just because — and sometimes, I’ve actually met only a few mean clients who were really mean to their partner, who thought that now that I have a disability, I should be treated like a princess or a prince. And all of the other responsibilities should be taken over by the other partner. And they should treat me like, since I’m very sensitive and I’m at the risk of getting another flare, or I’m just much more delicate, I’m suffering much more. But how do you decide that? Who are you to decide that you are suffering more than any other person? Suffering is the same for everybody. It may look differently, but everybody has a different threshold to actually tolerate those kind of things. 

So, I actually go back to those things and I, again, go back to the same pie chart like I had mentioned the first time. Try to put your life over there. And I do the same thing with pain, pain as well. What are the certain things, again, draw that same pie chart. There’s so many good things you can do with the stupid pie chart. 

[00:42:18] Cheryl:
I’ll put a link to a pie chart in the show notes too, as an example. Yeah. You’re talking the one with the 24-hours in the day, right? 

[00:42:27] Dr. Tickoo:
Yeah, Anything of that thought. So, I do it, you can do it with anything else. Now that I’m asking them to do it with the feelings that they feel, so what are you feeling? So, maybe in this much time of the relationship or after the diagnosis till this stage, I have felt this much percentage of my relationship actually felt joyous. And I’m going away from the words of happy and just sad. I’m saying you felt guilty, you felt joyous, you felt pleasant. This was irritating. She was all of those words. We can move away from happy and sad. That emotion is actually on the spectrum. So, go ahead, describe that. And then, I asked both the partners to share that. And there’s so much that you can learn. There’s so much that you can learn because what how did you actually decide that this much portion of your moments were happy? Or this much were actually joyous? What was actually irritating? And partners remember, they remember everything very clearly. So, why not use it as a means of communicating rather than actually fighting about it? Hear it out. What was — if we are discussing, if I actually find some common emotions on both the paper, I take a seat, I take a back seat, and I’m like, what do you want to both start talking about, now that you’ve had a chat about — now that you’ve seen your pie charts, what do you wanna have a chat about? And they choose one emotion and they talk about it. 

And I’m just sitting back, they need to talk about their listing it. I’m only here to show the red flag when they start fighting. So, when they start fighting. Yeah. And my only job comes later on when I am discussing about what modifications they can be doing in terms of doing these things, or how are they supposed to be communicating, or that is when I introduce the five love languages. Choose whatever you can, right? Whatever suits you the best. What is the one way you want to show your partner the way you want to love them? 

[00:44:28] Cheryl:
The five love languages. There’s words of affirmation, physical touch, acts of service. I forget the other ones. Quality time, and gifts. It’s such a simple concept that is so helpful. ‘Cause we tend to give love the way that we want to receive it and not the way that other person wants to. And it’s like the golden rule is like treat others the way you wanna be treated. But that’s not actually true. No, absolutely not. And my old job, actually, one of the best things I learned, I worked in human resources, believe it or not, and they said, don’t treat others how you wanna be treated. Treat them how they want to be treated. I was like, very good point. 

[00:45:11] Dr. Tickoo:
Exactly. Yeah, exactly. And I learned that quite late in life. Okay. Okay. Sorry. But like I said, my life has just started, but in this life, in this lifetime, yeah, it still took me such a long time to realize that. And that’s so bad. It’s so bad, right? 

[00:45:30] Cheryl:
Well, it’s how we’re taught. It’s how we’re taught as a child. You’re taught treat other people the way you wanna be treated. And so, know better do better. Have you read anything by Dr. John Gottman? He’s the marriage specialist, and he wrote ‘The Four Horsemen of the Apocalypse’. That has been super, super helpful. My husband and I — it’s the same kind of thing where it’s like there’s the five love languages and then the four — it’s the same kind of concept where you have these four things to look out for. In this case, it’s the four things you don’t want to do in a to do, or humans tend to do. And then, don’t knock yourself for being human, but it’s like defensiveness, stonewalling, contempt. And then, I always, forget one. But yeah, we’re very defensive and we know that about ourselves, so the knowledge does help ’cause we can notice it as it’s happening. And then, stonewalling is where defensiveness is where you’re so concerned with defending yourself that you don’t look at your partner’s perspective ’cause you’re focusing on you and why you are, which is not good. And then, stonewalling is where it’s like someone just refuses to engage. Nope, there’s a wall here. You’re not, I’m not gonna engage. But the contempt is the biggest predictor of divorce is seeing your partner as less than or just looking disdainfully on them. I don’t even, your opinion’s so stupid, And that’s — and it’s so important to to know these kind of frameworks, to look out for them in your relationships whether it’s talking about intimacy or any other things. But, okay, so sorry. So, you’re saying in the committed relationship, the five level language is awesome.

[00:47:09] Dr. Tickoo:
And obviously the activity pie charts, definitely, that’s the most easiest thing you can get into. And then, maybe go on with short-term, long-term, what do you want for it. And I always say that it’s going to be a sex-sory experience, so sexual and a sensory mix.

[00:47:27] Cheryl:
I love that. You should like patent all these things and have all these.

[00:47:32] Dr. Tickoo:
I was actually talking to my brother about this today. Like, I’ve come up with these two words. What am I supposed to do? I should be putting a patent on these words. And then, he was like, yeah, sure, go ahead, right? I’m like, oh no. What am I supposed to? 

[00:47:44] Cheryl:
Well, and then you were talking about disfunction, like dissing your function. And then, I was thinking, you know how, and I know a lot of people with disabilities don’t like this kind of differently-abled, people don’t like that. A lot of times they don’t wanna be called differently-abled because they think it’s patronizing. But I would say diff-function would be one different function. Like, I just, sometimes I think of myself as I have to do things differently. It’s not better or worse, it’s just different. So, that could be Dysfunction, Disfunction, and then — so, okay. Thinking about, I think sensory, we, as occupational therapists, we talk sensory all day long with pediatrics. But what about adults across the lifespan? 

[00:48:23] Dr. Tickoo:
Yeah. Oh, they need it the most, yeah, they need it the most. With kids, you see certain things happening and you are trying to start early on and they get that. But then, most of the times when you are considering adult who has had normal developmental milestones, so that’s normal, who says that some person is not having some kind of a sensory processing disorder? At some point in time, somebody is going to be like that. I’m tactile seeking and I need, for the matter, I am tactile and proprioceptive seeking, which is the reason why I like cuddling. And that is my way of having that kind of an intimacy with someone, be it my friends, be it any partner, be it with my parents. That is my form of intimacy. If I’m very joyous, I get stuck somebody. And I have the habit of hugging somebody because that is my way of showing closeness or intimacy with someone. So, that is how it is. 

And I’m saying develop those things. You will find something and you will find a middle ground for those things. So, maybe you do not like cuddling. I do. But just for once, like we are saying the service of giving, maybe you give me a tight cuddle. And it, for me, it does wonders. It does wonders, right? Not everything needs to be about sexual activity, which we say that. I usually think about sexual activity, like, I actually don’t even do that, but I usually say genital-to-genital touch. If I really want to be talking about the activity, sex, which has been considered as an emotion. But apart from that then — oh, sorry, I forgot. Where was I going? 

[00:50:05] Cheryl:
You talked about like communication in a committed relationship and I think —

[00:50:10] Dr. Tickoo:
I was at sex-sory. So, that’s the reason why I like to keep it away from both of the things because, it’s like we said, you need much, you need a lot more stimulation in general when you are in a relationship already, because you have already achieved that some amount of comfort zone. And it’s going to take you a lot more to push yourself or a lot more to stimulate yourself because you are already adapted to this thing. It’s a relationship you have been with, you are adapted to this person. 

[00:50:43] Cheryl:
Habituated. Would you say habituated in a way? 

[00:50:47] Dr. Tickoo:
Exactly. Exactly, So, once that’s done, you are going to need a lot, you have to put in a little more from your side to show or to be in touch with the person that you are with. Because the more you open up with your partner eventually in a relationship, that is exactly when you start getting more vulnerable. And then, you aren’t sure if that vulnerability or the other partner is ready to face that kind of a vulnerability with you. Or are they on the same page to share these feelings or emotions with you? So, I think these two things really help a lot. 

So, in that manner, it truly, because you are still regulated in a way when you are trying to introduce something sensory-based in a way that you’ll be exchanging something. So, you’re much more regulated and in touch with yourself, but at the same time you are, like, more just self-regulation, but it’s co-regulation. And it’s still going to, I’m still going to give you the same response that you’re looking for. It’s the same that we’ve learned for pediatrics. We just need to apply it on others.

[00:51:56] Cheryl:
So true. I know of a couple occupational therapists who are starting to look at sensory processing and chronic pain in general, and how sensory strategies can be helpful. And of course you think about the classic, quote unquote, ‘modalities’ like heat or cold, but there’s so that’s always seen as one of a biomechanical thing where applying heat to stiff joints so that it opens up the tissues. But what about the fact that heat is comforting and it makes you on a sensory level feel comforted in more regulated or a weighted blanket, even if you’re in pain, a weighted blanket or a compression glove for me works really well. Pain, really good for pain. Yeah. And it’s like that hug, if I get the proprioception seeking, and I know the people who are, again, not occupational therapist, so what are these ladies talking about? But happy to talk more offline about anyone who’s confused about anything we’re talking about.

[00:52:48] Dr. Tickoo:
But, yeah, that just sums it up. And I think that most of the times helps in improving communication a lot because now you are wondering together what’s going to be best for you and your partner and not just you that’s comfortable for both of you. So, that’s just the relationship now coming back to when you start dating, that’s the difficult part for everybody I think. 

The disclosure part is when you actually trust this person and you do it in installments, it’s not about hiding. You just say that there is something that physically hampers me, or I cannot reach my potential emotionally in some way, or mentally in some way. Give that disclaimer. Give that disclaimer. It’s completely fine if the person still stays and wants to know about it. Fair enough. If not, do it eventually. It’s not like ripping the bandaid off.

[00:53:44] Cheryl:
I think it’s hard because I guess I always disclosed early on because I didn’t wanna waste time with somebody who wasn’t gonna be open to it, and some people are like ableist or they’ll say, “I don’t wanna be with someone who has a health condition.” And I’d rather know earlier. But you’re right, there’s a way of maybe integrating it into your overall identity rather than maybe making it a huge focus? I don’t know. I think it’s, I think it’s hard. I think, and to me it’s like, if someone’s gonna be scared away by my rheumatoid arthritis, I’d wanna know that because I don’t wanna wait four more dates, and fall for them or something. If it’s going to be, it’s I would also say when I was dating in my, like, late twenties, I wanna have kids. If that’s a deal breaker for you, I don’t wanna fall in love with you if you don’t want kids, if that’s a deal breaker for you. And that’s, I respect that if that’s not what you want, but it’s if somebody doesn’t wanna be with somebody with a disability or they can’t handle that, I would just wanna know earlier.

[00:54:42] Dr. Tickoo:
If you are actually looking for a potential. If it’s just casual, does it truly matter to you or does it not? But then, if you are trying to find a potential partner, you maybe wanna take it slow, maybe. And I’m not saying that you’re hiding something, you just wanna trust this person, or at least try to trust this person or know this person first.

[00:55:02] Cheryl:
Yeah. I wanna get your opinion about one example from a friend of mine. She said that she told someone that she had rheumatoid arthritis, that she was going to go on a date with from a dating site. And they said, “As long as it doesn’t affect sex, that’s okay.” Can you believe it —? What do you think people should say? I guess what should you say is not like a black and white answer.

[00:55:25] Dr. Tickoo:
We’ll have to see. We’ll have to see. It’s not just me when I do the sex, I’m confident about what I do. Let me see what you can do when I’m there. 

[00:55:33] Cheryl:
Oh, I love that. I love that. 

[00:55:38] Dr. Tickoo:
At any point, you cannot stop embracing and accepting your beautiful self just because you have a disability. I am going to have my low days when I do not feel sexy, and that’s completely fine. That’s completely fine. That’s human, come on.

[00:55:52] Cheryl:
Exactly. Everyone has them, whether it’s a disability or something else.

[00:55:59] Dr. Tickoo:
Exactly. Exactly. So, I think even a person who has limited mobility is interested in having or engaging in any sexual activity for that matter as long as they are doing their bit and I’m doing my bit, we both are good at it. We can communicate and get wonderful at it. That response should just help her out. I hope it’s a her.

[00:56:21] Cheryl:
Yeah, it was a her. Yeah, sorry. Yeah. That’s great. Yeah, I love that. Well, what’s funny is I was thinking about asking about some, like, specific tips and tricks specifically for like people who might have limitations in their ability to have different positions and stuff due to arthritis. Do you have anything of that sort to recommend if like common things are difficult, like putting pressure on your wrist? 

[00:56:49] Dr. Tickoo:
Okay. So, I usually do not restrict them from using any kind of positions. I just say that if you are having like an active flare, just do not go very experimental with it. Try to use positions that are much more comfortable. Keep as many pillows and roll towels that are available for you. You can do that or the most important thing that I actually star mark for them is that either do it in the morning or in the evening after when you’ve already taken your medication. So, in that way you know that your body is just a bit relaxed, right? And it’s not going to be very, very painful for you. Or if that is what you think, try to space out the activities that you’re trying to do. It does not have to be penetrative all the time. You can just have, you both can just have a good time with oral play or anal play and anything of that sort, that just helps you feel pleasurable and that is all. This is all for right now. So, even if you — it does not, depending upon what kind of energy and how much endurance you have for the kind of activity, you can still engage in something and it does not have to result in — like, the end result is not supposed to be penetration. It’s about pleasure. As long as you can share that connection with each other, you are good to go. 

Scheduling sex is amazing. I actually have adults who are actually having better sex than they ever had while doing it spontaneously, because now with disability, spontaneous sex becomes a lot of labor because now you’re trying to readjust things. You are like, no, I need to get in this position. Oh no, this is a lot more painful for me. But now when you’ve already put it on your calendar and you are not, and you do not know what’s gonna happen, I usually ask them to prepare something for themselves. Just have some kind of idea in your mind that your partner would like, that you would like doing to your partner or something that your partner would like, right? In this way, both of them are working for each other and for themselves as well. They put thought into it. They are trying to recreate the whole moment. Plus the whole anticipation is amazing. 

And like I said, again, it has to be a sex-sory experience and give them that, which scheduling sex? Perfect. Because you are not looking for any other modifications. You are ready for this time. You have dedicated this time to be with each other, to connect with each other, and you can do whatever the hell you want when you are trying to schedule it, you know. It’s up to you. Who knows what it would lead to? 

[00:59:26] Cheryl:
No, that’s so funny you mentioned that because, yeah, the panel I had talked to, they said the same thing and that you can tie your medications to knowing that you’re going to have sex at a certain time and that also you can look forward to it. It’s kinda like a vacation when you know it’s coming, you can look forward. And the other thing that I thought was such a great idea that I’d wanna throw out there in case there’s any OTs listening to this one who didn’t listen to the other, is that one of the girls decided when they were fully clothed to try out different positions in pillows and prepping. So, you could separate, like, we’re not trying to achieve a climax. We’re not trying to actually have penetrative sex right now. We’re just having fun experimenting with positions that might work. 

And I was like, that’s brilliant. ‘Cause when you try to sometimes experiment when you’re already aroused and then you’re kinda like, oh, but this is awkward. And then, you to kinda lose that momentum. But you can do it as more like a physical activity, like, “Hey, let’s just try.” And she said that they were cracking up and having so much fun together. Yeah. Sometimes in pop culture or they’ll say things like, “Don’t schedule sex. You should be spontaneous.” But that’s totally not true for everyone, like you’re saying. Yeah.

[01:00:39] Dr. Tickoo:
Definitely. And people who haven’t already tried it, it’s actually like experimenting something new. And when you say this to them and you truly get to understand if they’re gonna like it or not. But my experience so far has been they like it. They enjoy it. The whole anticipation and that of that, oh, this, is how it went. It’s definitely going to be something new since this is what we just discussed. And it’s going to be like that. So, you can plan; you can do it spontaneously as well. And I think there was four — I still have got a lot of points. 

[01:01:13] Cheryl:
Yeah. You’re — this is so helpful. It’s great.

[01:01:18] Dr. Tickoo:
I have to, because I know that it’s not going to be one opinion, or one modification, or one suggestion is going to fit all. So, I need to put at least 5, 6, 7 out there so that at least one people can at least try using one in their practice or one in their own bedroom, at least one. So, even that can be life changing sometimes. 

[01:01:40] Cheryl:
I love it. Yes.

[01:01:42] Dr. Tickoo:
Okay. So, I think — okay, fifth is, I actually, and I actually love this part because it’s mostly sensory-based and it is much more adapted from sensate focused technique, but a little more modified towards occupational therapy in a way that if, you are trying to use a hot pack and trying to stretch out in some way, trying to do it in a more sexy way and maybe let the partner do it for you. And maybe you use this way to, if say you are going to do it for your hands, try to keep like a warmer, like a hand glove or anything of that sort. But just the partner can warm their hands just a little bit by rubbing, rubbing the hands together and try to hold your partner’s hand. Who knows? 

Sometimes it gets so intimate. It’s the idea is that somebody’s scaring for you and that sometimes works like a turn on for somebody. And yeah, it does. And there are two benefits to it. You are already releasing a little bit of stiffness from the joints, but at the same time, you are also recreating that kind of passion and desire for your partner. So, even though it’s not, who knows, it can lead to something sexual, but then you have still connected with your partner in some way or the other. And pain is not something that’s dominating their body right now because they have much, they have other emotions to tend to at this moment.

So, again, just do it for anything, be it in the side of massage. Or just taking a little bit of hot oil, just running it through the hands, anything of that sort. Anything which eases your partner’s pain, but at the same time is keeping you all connected. And if at all you decide to engage into anything further, your partner is trapped. They already have stretched a little bit and you, have helped them do that. And, okay, what else am I using? Well, I think the positioning, I actually like it and I think that they are so sexy. 

[01:03:47] Cheryl:
Do you count like pillows as a positioning aid or do you mean something more? 

[01:03:51] Dr. Tickoo:
I do. I can, anything apart from the usual thing, it does not have to be fancy. One of these times, the couple really — so the female really had a lot of problems. So, so she had this habit of keeping her fingers inside when she tried to weight bear on her hands in a dog position. And when you try to shift it for her, it’s just a little modified doggy when you do not go back, like you are not on all your toes, but then you can hold the bed stand and the bed stand had a broader curvature, right? So, even if this is her moment, because she, whatever way she feels that she needs to contract, because that’s an involuntary movement, maybe you can do it on the bedside which already has a broader curvature.Even if it does not, even if it’s not that way, you can just put like a strip of foam over there, or just use, you can just keep your blanket there. Anything of that sort, anything that’s much more thicker, much more comfortable, that does not put a lot of strain on your hands and does not make you take all of your body weight.

[01:04:57] Cheryl:
That makes sense. Yeah.

[01:04:58] Dr. Tickoo:
So, one of those things really helps. Even with slings, I think, one of the, one of my patients could not afford slings. And slings actually, if you actually buy them off the market, like the proper black ones, which they show and adaptive devices for all kinks and BDSM stuff, it really helps because it really helps you position your partner. So, your partner won’t be taking, they won’t be taking in, like, when you actually start doing the activity analysis, even for positioning, you see that a lot of patients actually are putting a lot of body weight on their hands. Or just on the fingers or the thinner area, like right here. So, and the wrist, again, by default goes in this ulnar position where in an ulnar deviation and a little more pressure, which again is going to create, like when we say these are the bad positions when you are dealing with rheumatoid arthritis. 

So, I think in that case, slings really help you to, support your partner, right? In that way when you are taking the lead role, or if you are, like, if you’re not dominant, you’re submissive or anything of that sort, anybody who’s staying in the lead role, a sling can actually help you position and take your weight off your hands. Even with aids, I think I do recommend lubricants a lot, especially to bodies with vulvas and people who are identifying as females because, they usually do complain of vaginal dryness because of disease modifying drugs. So, and that is also one of the part of client education that I do. 

I actually try and make — I ask them if they are aware of their diagnosis, and I usually communicate and I ask them to tell me about what they think about what their diagnosis is, or what can the limitations be? Or have they understood everything? And what can be the side effects of these medications? And most often you will see that nobody is explaining the client about their diagnosis, which is just such a horrible thing to do. Why wouldn’t you explain somebody about their own diagnosis? They wouldn’t get the whole part. But then you need to explain at least just a little bit.

And especially if medications are going to do that. And I know, like I said, like when I was still, like, doing my bachelor’s and I think one of the clients said that I’m trying to get pregnant and do you think these medications are going to affect that, any of those things, because my husband then won’t be engaging in these kind of activities with me, and most likely will lead to a divorce because that is how it has been right now, because they think that I cannot give them a baby because of this thing. So, the whole, yeah, the whole idea and the whole dynamics of not understanding of how these medications can affect you or what actually could be the side effects of these medications is really shocking. 

So, that is, something that I usually have, like, that’s the first thing that I do in my client consultation is that we talk about the diagnosis, we discuss what they understand, what I understand, and what usually can happen so that they know that this is not something that’s happening to their body or they’re the only person experiencing this. But there’s something that we can do. And I think that is when we started exploring lubricants and ideally I did say KY jelly. And then, when I started learning about lubricants and I realized, that’s bullshit. Nobody should be using KY jelly. 

[01:08:56] Cheryl:
Oh, why? What’s wrong with it? I’m just curious. 

[01:09:00] Dr. Tickoo:
There a couple of things that go into choosing the lubricant, but one of the major things is osmolality. So, it’s about maintaining the, apart from pH and every other thing, you need to maintain the concentration of your skin when you are using anything else. So, it’s like the whole osmosis process, if you’re familiar with, from the larger concentration, it goes to the smaller concentration, things like that. So, KY jelly — so the ideal, actually the epithelial surface or the human skin surface is actually going to have an osmolarity of somewhere around 300 milliosmoles per kilogram. That is the unit. And KY jelly is somewhere — and 1,200 is the recommended one. So, look at the levels. So, it’s 300 that your body can take, 1,200 that’s recommended, and KY jelly is somewhere around 2000 and about. So, rather than — and so rather than doing any good to you, it is actually going to make your surrounding skin much more drier. And it’s going to make you reapply it again and again. So, you are reapplying something that is not already good for you, and you’re doing it in a lot of doses. And since you are using it for vaginal dryness. You have already spoiled the entire integrity of the vaginal area. Yeah.

[01:10:31] Cheryl:
Wow. I know. It’s like they say a certain it reminds me of certain chapsticks you’re not supposed to use ’cause they dry out your lips. It’s probably the same. Okay. So, that all lubricants are not created equal is what I’m learning.

[01:10:46] Dr. Tickoo:
They absolutely aren’t. Oh, no. And then, you also want something that’s paraben free, that’s sulfate free, petroleum free, everything free. And I don’t think Astroglide or KY Jelly is free of any of those bad stuff. Okay. So, with aids, I think I have one more thing that is toys. And they usually help you a lot. 

[01:11:08] Cheryl:
Is that vibrators? 

[01:11:09] Dr. Tickoo:
Yes, absolutely. 

[01:11:11] Cheryl:
Oh, okay. That’s what I thought. Okay. Sorry. I just wanna make sure.

[01:11:13] Dr. Tickoo:
No, everything. You can use anything and everything that you want. You can have dildos, you can have vibrators, you can have one that can be used — so, even with vibrators, you have internal vibrators, external vibrators, something that you can put inside, like I said, inside, and then you have these suction cups. Then you have masturbation sleeves. There’s so much happening with toys. And it can really help you because I know one of the clients that I had suggested a masturbation sleeve for, the partner was asking for a hand job. And it was much more difficult for her to do it because with the kind of strength it required. Now these masturbation sleeves are incredible. You can just pour lube into it. They already have these buds inside, which can act like great stimulators. It does not necessarily vibrate. I think you can find a different kind of masturbation sleeve that vibrates, but I did not recommend a one that vibrate at the same time because I thought it would do much more damage to a small joints while should be holding them. 

But then, it’s so much more broader. It’s so much more broader so that you are using lesser effort because you are using something else, but there’s an enhanced sensation for the partner. So, you don’t have to use a lot of energy. Now, we are thinking that they need the joint needs to be in good position. You aren’t exerting a lot of pressure and your partner feels good at the same time, all three check boxes. So, it’s just that they need to be more open about it as long as they feel that. The only discussion comes around openness to using these things as long as you, like, provide these options not as you need a walking stick. How can you need a walking stick? It’s like that you need to move away from the idea. Everything can be sexy as long as you think it’s sexy. That is all that matters. Anything. For God’s sake, a blanket. I’m not even trying to, make everything sound like you need to go outside and buy these things. Not really. You don’t have to. 

[01:13:17] Cheryl:
You can use what you already have. Yeah. Perfect. 

[01:13:20] Dr. Tickoo:
And that’s, I think that’s a huge list of, modifications or aids that you can use. And they usually help so much. And like the, way we discussed about sexual experience, these aids actually work that way. They are enhancing your pleasure, they are saving you energy, but at the same time it’s keeping it pleasurable for both of you. You see a partner feeling good, you feel good about it, right? And vice versa, same. And I think the last, and my favorite that I’ve discovered, like, in the last six months is pleasure mapping, where you go everywhere. You can choose anything you want. And pleasure mapping actually includes the whole bunch of modalities and everything else that I discussed here because as long as it’s pleasurable, you can do anything you want. You can go ahead.

[01:14:12] Cheryl:
Can you define what is a pleasure map? Is it like, do you write down all the places in your body that are pleasurable or all the things that you like that make you feel good or one of them?

[01:14:20] Dr. Tickoo:
Yeah. That is how we start about it. So, when you, yeah. So, that is when you sit down with your partner, you can just draw a, like a picture of your body. Oh, you can just say, or talk about the parts that you find the most pleasurable. And let your partner do the same. And it works both ways. So, if you are doing it, you will actually write down the parts that are most pleasurable for you. And I am going to write down what I think is the most pleasurable for you. And again, same. I will write the parts that are most pleasurable for me. And you are going to put your ideas to what you think works best for me. Compare all these four charts and that usually tells you a lot more about what you are trying to do with your partner rather than what they actually like. 

So, now, you both have mapped the pleasure together and you both know that there are certain areas or certain spots that you had already known. And there are certain things that, that actually don’t work for your partner, but you thought it’s good. So, maybe you don’t spend a lot of time there. It’s going to save you a lot of energy, especially when you are in pain. There’s a lot more fatigue, or that the medication time is going is not going to stay for very long, but you still want to do it. It just saves you a lot of time, that’s all. That’s all. You are not wasting your, you are not wasting your energy doing something that your partner does not like, but rather you are using whatever amount of energy and time that you both have into something amazing and pleasurable together. 

And then, you explore these erogenous zones, the other zones apart from the genitals, right. So, that you can spend some more time there. So, it does not have to be anal, oral, and then let’s go in. So, there’s a lot more happening with the body. Everybody have their own sweet spots. Everybody has some area that works the best for them, or some method that works the best for them, some position that works the best for them. Let’s do that. Let’s go through everything that we can. 

[01:16:25] Cheryl:
That makes so much sense. There’s always a part — you get into routines, especially like in an established relationship. You have your little routines and you, and, you can forget, oh yeah, my ears are actually like really sensitive. But we just haven’t really gotten that in our routine yet. So, or like my lower back is like I do being touched on my lower back, but I don’t always communicate that or something. So, that’s such a great exercise. I love that.

[01:16:51] Dr. Tickoo:
I love the whole technique of body mapping because it requires so much communication and the idea about what you think. And that’s the whole thing, and this was the biggest thing that I experienced, that everybody was saving time and energy.. And at the end result was a lot of pleasure. And what better than saving time and energy for a person who is already diagnosed with rheumatoid arthritis. You have that is exactly what they need. We are trying to simplify their work if that is how you want to, again.

[01:17:29] Cheryl:
Totally. Oh, I love it. I love it. Do you have any, like, anything else you wanted to say in conclusion? This has all been wonderful, so there’s no pressure. I just didn’t wanna end it without giving you any final closing words. 

[01:17:48] Dr. Tickoo:
Know yourself. Do what suits you the best, and you are awesome. So, that’s all. 

[01:17:58] Cheryl:
Yeah. No, the confidence is the most sexy thing. That loving yourself is attractive. Let’s put it in the positive. When you love yourself, it’s attractive, I think.

[01:18:06] Dr. Tickoo:
True. True. And I would say that I don’t love myself, but the fact that I’m proud of certain things in my life, they do make me feel a lot more confident. So, even though I do not feel confident about saying that I suffer with some disabilities or I have chronic illnesses, if I’m not proud about seeing all these things, I can still say that I’m an awesome person who’s trying to create an awesome job and I’m bloody good at it.

[01:18:32] Cheryl:
Yeah.

[01:18:32] Dr. Tickoo:
And that’s all. That’s all. And yeah. Disability is part of my life. Yeah, it’s like a PS note, but not the main starting sentence of my life. 

[01:18:43] Cheryl:
I love — one of the women I interviewed just said, I have RA but RA doesn’t have me. Living along, I like to talk about living alongside rheumatoid arthritis, but living with it. But it’s not like it controls me. It’s just something that is with me. Oh, this is so great. Thank you so much. I’m gonna make sure to include all the links to your different accounts on Instagram and any ways people, I’m sure you’re gonna have people that wanna get in touch with you, do you see people outside of India at this time?

[01:19:20] Dr. Tickoo:
I do. I do. I do. It’s telehealth, like I said, one of those masturbation sleeve with adaptation was for somebody outside. Because, it’s still very expensive, like masturbation or sex toys aren’t very progressive here as of yet. And even the ones that are, they are really, they’re really expensive. So, it’s only the urban population who can use it. It’s not very inclusive in its innovation that way. So, yes. But then you have so many great things, and I think that is one of the awesome things that I’ve learned about it because, and the reason why I have got such good at doing what I do is because I’ve got like this global exposure of clients. People, even with telehealth, they come over here and they wanna talk about things. I would spend a lot of time talking to them. And knowing about what do they like, what is it like in their culture? What is their interpretation of their culture? And you just learn so much. You learn so much.

[01:20:25] Cheryl:
Oh, that’s so, yeah. That’s, and it is a universal experience that, you know, but each person’s experiences, it’s like a paradox. It’s like, it’s universal that most, a lot of people have it, but that it’s still individual unique. Yeah. Yeah. It’s both. I love that. Thank you. This is so helpful. I think you’ve chosen such a wonderful niche that is an important part of a lot of people’s quality of life.

[01:20:52] Dr. Tickoo:
I know. And since nobody talks about it, there’s so much less information and you tend to give out the wrong kind of information. Which in turn does not make you feel good about anything at all.

[01:21:04] Cheryl:
So, it just seems like occupational therapists are so perfectly positioned, ’cause we have this bio-psycho-social approach. We’re not just looking at the physical, not just the positions, but we’re looking at holistically at your internal mental processes of your psychological wellbeing and your social, and this is an interaction between human beings. So, yeah, I just think I’m happy to elevate the role of OT and helping people with arthritis or other conditions have the best sexual wellness that they can. I think that’s wonderful. 

[01:21:39] Dr. Tickoo:
Like I said, we really think that there’s no information out there, and to be very honest, we have all the information that we need. We just need to think about it in a sexy way. That is all. I don’t think I mentioned any of the things tonight with you that there was any different from what we would have done as an occupational therapist working with some other kind of population. It’s pretty much the same. I think we just don’t — we need it just a tiny bit sexy. And that is, I think that’s the only difference in my treatment approaches, I think. That’s all. Thank you so much. It was so amazing. I think we need to have a separate date to talk about other things.

[01:22:25] Cheryl:
Yes. No, and I said before, like, I wanted to feel like a conversation between friends and it’s funny ’cause I feel like we do really connect. And even though we had never talked before today, it is so funny to me.

[01:22:38] Dr. Tickoo:
It was so much fun. It’s so amazing.

[01:22:41] Cheryl:
Okay, well, thank you. I’m gonna stop the recording, but we can keep talking for a second.

[Ending note] 
Thank you so much for listening to today’s episode. Don’t forget to check out my latest courses and resources on myarthritislife.net. This podcast is brought to you by The Beginner’s Guide to Life with Rheumatoid Arthritis, a four week online education and support program that I created from scratch to help people with inflammatory arthritis learn everything they need to know to navigate the social, emotional, physical, and logistical challenges of rheumatoid arthritis and related diseases. You can also connect with me on my social media accounts, on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes.