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Patient Stories, Podcast

Becoming an Advocate with Lupus and Type 1 Diabetes: Melissa’s Story

May 17, 2022
54 min read
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Summary:

Have you ever wondered what it’s like to juggle multiple chronic illnesses? In episode 69 of the Arthritis Life Podcast, Melissa shares her journey getting diagnosed with lupus and type 1 diabetes at age nine, through to today when she works as a mental health occupational therapist in the UK. She shares how she learned to be a more effective advocate over time, and provides insights into how she copes with the ups and downs of chronic illness life.

Episode at a glance:

  • Melissa’s Diagnosis story for Lupus & Type 1 Diabetes as a nine year old
  • Melissa becomes a mental health occupational therapist while managing her conditions
  • Melissa shares her treatment ups and downs for lupus, including medications and lifestyle factors such as exercise and stress management
  • Advocacy: Melissa shares her journey towards becoming a health advocate 
  • What to do when your supporters or caregivers don’t “get it?” 
  • Melissa’s Best Advice for people newly diagnosed with Lupus and/or Type 1 Diabetes
  • Melissa’s Mental health / coping tips for chronic illness life

Medical disclaimer: 

All content found on 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 Sponsors

Rheum to THRIVE, a community support & education program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Join the waitlist for the next group, which starts in September 2022!

Rheumatoid Arthritis Roadmap, a self-paced online course Cheryl created that teaches you how to confidently manage your physical, social and emotional life with rheumatoid arthritis. 

Speaker Bios:

Melissa Chieza: I am a health professional who is also a patient expert. I was diagnosed with a chronic condition from the age of 9. Being a young patient I soon learnt to take ownership of my own health. I had to advocate for myself whilst being looked after with medics, endocrinologist and being under the care of the rheumatologist. As a result, as my years unfolded my desire to give back to our health care system my occupational therapy passion was birthed. Alongside my day to day job in my spare time I volunteer in the versus arthritis uk panel where regular discussions which include patients living with  juvenile arthritis, fibromyalgia, lupus, Ankylosing spondylitis  are broadly discussed.   

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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.

Episode links:

Full Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Melissa Chieza)

[Introductory music]

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, and 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.  

Cheryl:  

I’m so excited to have Melissa here today on the podcast. Welcome!

Melissa:  

Thank you, Cheryl, for this opportunity. And I’m looking forward to chatting with you today. 

Cheryl:

Yeah, me too. Yeah. So, just to start off, can you tell the audience a little bit about where you’re from and what is your relationship to arthritis? 

Melissa:

So, hello, everyone. My name is Melissa. I’m 24. I’m living in the East of England in the UK. I have type one diabetes and lupus.

Cheryl:  

Awesome. And then with lupus, I know lupus can have so many different, you know, symptoms. Do you have joint pain as one of your symptoms?

Melissa:  

I think with my lupus, the only impact is with my skin, it rarely impacts my joints unless I’ve done a five day straight at the gym. The joints will be impacted. But for me, it’s just my skin.

Cheryl:  

Yeah, okay. Okay. Yeah. And I would love to hear more, because, I mean, lupus is famous for being difficult to diagnose. And type one diabetes can also be difficult to diagnose. And so, you know, I would love to hear more about your diagnosis journey. How did that — how old were you when you got diagnosed, and was that an easy or difficult process?

Melissa:  

So, for me, my diagnosis. So, months before I got diagnosed, I was having episodes where I was very fatigued from school. And my parents had just sort of have to take me from one room and take me upstairs. And I think at that point, they took me to A&E. And then I was being brought to another hospital about an hour, 50 miles, away from home. I was in there for like a couple of weeks. They did plasmapheresis; they did blood transfusions. And then, eventually, on my ninth birthday, I was diagnosed with type one diabetes and SLE lupus. So, obviously, anyone with a kid at nine, you’re thinking — my sister actually bought a chocolate cake which I couldn’t eat, and I was just like, oh. So, life sort of, was sort of not turned upside down. But life changed after the age of nine for me.

Cheryl:  

Wow. Yeah. So, you got both diagnoses at once. That’s huge. And what — tell me a little more about how your life changed after that? What did that look like?

Melissa:  

So, for me, most of my parents, so, most of my family’s in the medical setting. So, my dad was a nurse, mom worked in the NHS, and my sister was also in that. So, they all worked in the NHS field. So, obviously, it changed a lot in our family. But obviously, we tried to keep things as normal as possible. So, if there was activities I wanted to go to, they’ll make sure I could still go to them. But having this, or what I needed. But also, I think for everyone, it’s like, when you’ve got a new condition coming on, you sort of just try and pull together and connect. Which I think that’s what we did.

Cheryl:  

Yeah, it’s a huge benefit having family members, like immediate family members, who have some medical training because it can be very overwhelming. There’s so many new terms and so much new terminology, you know, and some people are like nervous about, you know, doing the — what do they call them — like, the blood sticks, you know, where you have to prick yourself. Was that hard for you? Did you did you have to manage your blood sugar’s by, you know, monitoring with — what do they call it? The finger prick or finger stick?

Melissa:  

Yeah. So, obviously now, at the time, I was hypoing, I think, maybe 4 to 8 times a day. So, I will say that my family would know like when I — would know like based on my reactions like, okay, she’s going low, or she’s getting high, or they’ll know like my symptoms. But also, as we skip forward a bit now, there’s lots of technology. So, now I use the Dexcom G6 and the Tandem t:slim pump. So, the Dexcom D6, there’s times where in my household we sort of say, “I want to throw the Dexcom in the bin,” because it’ll be screaming and the pump sort of allows me to notice based on the trend when I’m going to go low, and they’ll stop giving me insulin. So, I’m grateful for the technology. I know some people are still trying to access this technology. But I’m grateful to have it, especially with my line of work as well.

Cheryl:  

Yeah, yeah. Tell me a little bit more about your work. What do you do?

Melissa:  

So, based on all this journey of mine, it inspired me to pursue occupational therapy. I had occupational therapy as a child through my journey of lupus. And then obviously, it led me to my career of being an occupational therapist. So, obviously, for me, as I said, I like the Dexcom G6 because I work in a crisis team. So, sometimes, like, some days are different. Like, you can go in, it’s like — it’s not a normal day, every day is different. So, you have to be flexible in your approach. Some days, they may go for lunch earlier, some days, or maybe giving activities or intervention or educational groups. 

So, just having that reassurance that okay, my bloods are okay, or just looking discreetly at my watch allows me to feel more in control of my diabetes. But also, something I picked up this week is that someone mentioned that the family members are like the type one caregivers. There’s like another type one in the family. And sometimes, we don’t always see the burden the long-term condition can have on them as well. The emotional strain where you’re frustrated, your levels are like this, or your arthritis has played out like this. We don’t sometimes don’t see that and how it impacts them as well. So, obviously, they also, need to have that support as well. So, that’s something.

Cheryl:  

Yeah, absolutely. Okay. And so, I want to step back for one second, because I’m realizing some people who listen to the podcast might not be familiar. They’re familiar often with like all the different kinds of inflammatory arthritis, but not necessarily diabetes. So, when you say type one, that’s short for type one diabetes, right? 

Melissa:

Yeah. 

Cheryl:

And then when we say ‘your levels’, we’re talking about your blood sugar levels? 

Melissa:

Yes, that’s correct. 

Cheryl:

Okay. Yeah. Yeah, I’ve just, again, like it’s — when I listen to a podcast and they use a bunch of acronyms or not, I mean, these aren’t even acronyms, but, you know, shortenings, I’m like, “What are they talking about?” So, and also, like, yeah, ‘going low’ or ‘going high’, is simply like when your blood sugars are low, right, and then versus when your blood sugars are high. So, and then when you say — this is actually something, I don’t know — when you say you’re in the United Kingdom on a crisis team, what is that? Is that like emergency crisis? Or is it like a mental health crisis?

Melissa:  

So, I work with a mental health. So, obviously, as you know, COVID has impacted a lot of mental health. So, obviously, we’ve seen an increase of people needing mental health services post-COVID. So, a simple thing could be like, for example, during COVID, a lot of people were told to shield the most vulnerable categories. So, some of my line of work could be trying to allow people to access community again. So, that could be through some graded exposure work. So, we sort of say, for example, if they want to access community resources, they may just perhaps do some graded exposure work which consists of perhaps taking them to a place together. And then the next session, I meet them, I’ll say, “Okay, I’m going to meet you halfway. You go the first half, and then I’ll meet you there.” And then sort of allowing them to have that independence to be able to do that journey independently with some support. And then the final trip could be like, “You’re gonna do the whole journey by yourself, but I’ll meet you on the way back.” That’s just one aspect. 

Something else could be delivering educational groups, So, six targeted group interventions with a well-known occupational therapist called Sue Parkinson, who wrote ‘Recovery Through Activity’. She’s well known in the occupational therapy industry. But yeah, so, some of that could be pacing, energy conservation, motivation, and recovery plan. But also, thinking how food impacts on mood. Because obviously, I don’t know about you, but when we eat like healthy food, we feel more energized and vitalized in comparison to where we take food and we feel more sluggish. So, just sort of educating how these really impacts your mental health. And the last one we may cover is medication, which we all do alongside our nursing team, is thinking about how medication impacts certain factors or like, you know, when you eat certain medication, you’re like, “Okay, this is what’s happening,” and just be aware of those side effects, really.

Cheryl:  

Yeah, that sounds really comprehensive. I love that. I’m all about self-management is my favorite part of being an OT. So, that’s so cool. Yeah. And were you nervous at all? Like, people ask me sometimes were you nervous about going into occupational therapy knowing that you have a health condition as well? Or did you feel like, okay, I can do this, you know. Or both probably a mixture.

Melissa:  

I think — so, what I did is I finished my GCSE’s, that’s what you’re doing in the UK. I don’t know, in other places there may be something else like your A Levels, but depending on your state. So, I took a year out partially just to regroup and see what I wanted to do, but also, I think in that year it allowed me to see how my conditions were. And obviously, I’d already had the pre-discussion with my medics beforehand. Like, okay, these are my plans. We had really made a detailed plan, like, okay, if I get into this university, the nearest special centers are here and here. We made that plan. I think I didn’t feel apprehensive because in the UK, there was legislations and policies in place. So, obviously, the Equality Act 2010 highlights about reasonable adjustments, and anyone with a long-term condition can have reasonable adjustments in place. Also, there is like disabled access grants as well. So, like, if you need extra time to write assignments, extra time to have loaned books, or even a scribe, that’s all there in place. So, there are legislations to protect you. So, I think I didn’t feel anxious about that. I think the first few weeks, I did feel anxious because my diabetes was a bit, like a bit of a roller coaster because I was travelling into London. And obviously, my levels are a bit fluctuating in terms of what I’d be by the time I got there. But then, I guess, with the tech I had, it made it better.

Cheryl:  

Yeah, yeah, I think just knowing about your rights, and knowing about your accommodations in the first place is a huge help. And a lot of people don’t know, you know, their rights. And it can be confusing in the United States, because things can differ, like federal versus state. But yeah, that’s great. You know, I was very optimistic kind of as well. Like, okay, I’m a little nervous, but I feel like as long as I can get my RA under, keep my RA under control, my rheumatoid arthritis under control, you know, medically, that I should be okay. But I just know, it’s something that a lot of people worry about, so. 

And the other thing I want to make sure I don’t skim over is a lot of people with rheumatoid arthritis have a comorbidity of either lupus or type one diabetes. Like, if you have — they always say like, because type one is autoimmune, if we didn’t already say that, and lupus is autoimmune too. So, you know, type two diabetes can be brought on by your lifestyle choices and stuff like that, whereas type one is, you can get it when you’re — a friend of mine, who has RA, her daughter got a type one diabetes diagnosis when she was eight months old; it can happen really young. But what, um, let’s just take one at a time. For lupus, what have been some of the treatments that you’ve done that have helped? How is lupus treated, basically, in a nutshell.

Melissa:  

So, for me, prednisolone has been a long-standing treatment for me, with high doses. We’re now sort of slowly weaning down with my medic’s support. So, currently, just find a weaning plan of trying to get down to a sterile dose of five milligrams, which I think, I’m sure you can relate is when you’re on steroids you’re trying to make sure we don’t go too quickly, but you get the disease element under control before you take everything down. The other drug I take this hydroxychloroquine, which I think was mentioned quite a lot during COVID when Donald Trump mentioned he was going to take hydroxychloroquine. I take that every day. I also take azathioprine as well. In the past, I have taken MMF, mycophenolate phosphate tablets. I’ve had a few rounds of cyclophosphamide. And I’m currently, every 12 months, I take a biologic of rituximab. 

Cheryl:  

Oh, okay. So, once a year. Okay, and I know that for RA, it’s usually every six months. So, that’s interesting. Yes, certain meds, they’ll have different doses for different conditions. So, that’s a lot. And then, what are some of the lifestyle things that you do, you know, now that you’re obviously an OT, so you’ve learned a lot of energy conservation, or pacing. What are now what are some of the things that you do on a daily basis, on a weekly basis, that help manage your lupus symptoms, if anything? And maybe if it’s more skin involvement, maybe it’s not pacing, sorry, I was just — I always think of fatigue, but if you’re not fatigued, then don’t worry about it.

Melissa:  

So, I think, one thing, I was quite fortunate to have a trainer which I found on Instagram, her name is Talia. So, I’ve been working with her for quite a bit of time. I think throughout my university life and a bit now. The other thing I will say is, from my well-being I tend to write. So, I get up at 6am every morning. So, I tend to just spend the first 15, 20 minutes, have a cycle in the morning, then I spend 10 minutes just writing my thoughts on paper just to let your brain sort of think about, okay, what’s worrying you and then just put it on paper. And the other thing is I try and not commit to everything. I say — 

Cheryl:

Tell me how to do that. I’m so bad.

Melissa:

I think COVID has taught me — the last few months — has taught me that. I’m always wanting to say yes to everything. But then you have to remember that there’s no right to say ‘Yes’, you’re only committing to yourself. And it’s okay to say ‘No’. So, I usually go on the lines of, “Oh, sorry, I can’t facilitate this request today. Is there where you could—” perhaps like, “Can we review this later in the week to see if it’s a priority?” And then you don’t have to give people a reason why you can’t. Say ‘No’, it’s your choice. I think that’s important.

Cheryl:  

Gosh, yes, I need to record — well, I am recording this. So, I’m gonna repeat this part to myself. It’s so important. It’s so important.

Melissa:  

And then, the other thing I ask myself, okay, if I do this, how is this going to impact me? But also, is there something else that is more pressing that I need to do? So, like, I have to — I always wake up like, okay, if it cannot be left to another day, how is it going to value me at this moment in time if I say yes, and what have I missed if I say yes to this? It can be — you have to be cruel and kind to yourself. But also, remember that your capacity for it as well. Because you can say yes, yes, yes. And then you’re running on autopilot. And then you think, okay, I am exhausted, I need to sleep for the whole day.

Cheryl:  

Yeah. Yeah. And I think a lot of times — I’ll just speak for myself — that if your condition has made you have to say ‘No’ in the past, you can, you know, there’s a grieving that goes with that, right. Like, if I didn’t have RA, if I didn’t have fatigue, I’d be able to say ‘Yes’ to more. And so, then there’s this tendency to be like, well, I’ll just push through because I, you know, I don’t want my RA or my health condition to hold me back or whatnot. But that’s still kind of like a toxic mentality, right. It’s like, you know, you do have limitations and being able to look them in the face and be like, yep, I can accept this. I don’t have to like it, but I accept it. And, you know, I don’t want to be so stubborn to be like, I’m just gonna pretend I don’t have this and I can do everything. You know what I’m saying?

Melissa:  

Yeah, yeah. And it doesn’t add value. Because I’m meaning like, you don’t know the tasks you’re doing is going to cause you more stress, or it’s going to just alleviate the pain. I think it’s — and sometimes if you say, you could be like, okay, you don’t want to say no, because it’s not okay, I’ve got a meeting with friends, and they’ll be like, “Oh, your arthritis.” But if they’re truly your friends, they’ll understand that, okay, Melissa is not available to them. Melissa said ‘No’ and she’s tired or whatever. You don’t need to give people the reason why you said no. It’s your personal choice.

Cheryl:  

Yes. Sometimes people say, you know, “No is a full sentence,” which, you know, I never say sentences that are that short. So, I always joke like I don’t know how to do that. But yeah, and the other thing I repeat to myself is something I heard once, which is like, just ask yourself, does it have to be done, period? Does it have to be done now? Does it have to be done by me? And does it have to be done by me now? Because I feel this like impatience all the time, like oh, I have to say ‘Yes’, I have to do this. And then what ends up happening is not only do I end up sacrificing time and energy and stress, but then I don’t do as good of a job. I end up making mistakes because I’ve overcommitted and I’m trying to rush through and get everything done. So, it’s not kind to yourself, and it’s not kind to others to always say ‘Yes’ if you can’t actually, if you don’t have the capacity to fulfil that demand. 

So, yeah. I’m glad we covered this because it is something a lot of people struggle with, is knowing your boundaries. Another thing someone said once in one of my Rheum to THRIVE groups that I really loved, it’s so simple, but it’s, “Plan your week or plan your day for like 75% to 80% of what you think you’re going to be able to get done.” If you’re like a chronic over-committer, you know, because that’ll remind you to say, first of all, just build — in other words, build in some wiggle room, you know, build it into your schedule, don’t start by overscheduling yourself because you’re kind of already fighting a losing battle at that point. And then I want to make sure to get to the topic I know you’re really, really passionate about which is advocacy. So, you know, how did you become an advocate? What inspired you? And I’d just love to hear more about your advocacy.

Melissa:  

So, my advocacy. So, basically, whilst I was in my second year of university, I wanted an insulin pump. So, where I was living at the time, in our local hospital, the pump list was an 18-month wait. So, I was going through the stages, I was travelling into London, Kings Cross which is very famous. Anyone who has been to the UK will know about it. I was travelling and taking about time, four days a week. And it would be a case of in those four days a week, every day, I’d go home from uni, I would hypo. I’d go low, basically. So, my bloods would go below three, and it was going to when it was like happening every day after uni, So, it was getting too much. And obviously, I do this thing where I would text my family what’s up, my family group chat. I’d be like, guys, can someone text me in 20 minutes to see if how my bloods are doing? So, it got to the point where enough was enough. So, I basically had the chat, I think a few weeks later, I had the appointment with my diabetes team. I asked the consultant to basically switch my hospital. So, from going from a local hospital to a land trust. And there, she said, “No.” 

I wrote a complaint. I quoted all the literature find, because in the UK, you can ask for a second opinion, you can transfer to another hospital if you want to. So, obviously being a second year OT student at that time, I knew my rights, but she was like, no, no. And I stated like, this can’t go on forever. So, in the end, that all happened, and I got my GP involved, and everyone got involved. So, I think by — was it like the summer, because I’d been to Australia and my sister was living out there for a bit. She was on a career break. And then the transfer happened once that — after all that fighting and happening, my parents are like, “Melissa, what have you done? You’ve made a mistake.” They’re just like, “How dare you,” like, I didn’t get the silent treatment, but they’ll just like, “You could have handled this better.” But obviously, I fought what I could. And it was just, sometimes, if you’re not getting the care where you are, it’s time to move. And in my view, that is what I did. 

And then in the summer of, I think it was 2019 before I went to Australia, I got a confirmation from London Trust. And then I saw this lady, I saw my consultant, second week of October, I walked into that clinic. And the doctor said to me, “I don’t know why you didn’t get an insulin pump sooner.” So, it was all that fight and advocacy. But also, sometimes, I feel like we are the people — I have been saying, what I say to my rheumatologist every time I see him, “You’ve only seen me for 15 minutes.” And then obviously, there’s 24 hours in the day. Then the next 23 hours and 45 minutes, I’m left by myself. You know their condition more than you know everyone else. And at this point, I was trying to let — I was trying not to let diabetes define what I could do. Obviously, that was — but the struggle is very hard, because you hypo. And then obviously, there was that balance and obviously work and driving, and it was just the rules and regulations in the UK. So, for instance, if you go low again, if your blood sugar drops below three, you have to wait 45 minutes to drive. So.

Cheryl:  

Your blood sugar can go to actually three?

Melissa:  

Less than three. I know some people it’s gone down to less than or more than that. Maybe some people can have a low blood sugar 1.8. But in the UK society, though, if your blood sugar goes low, you have to wait 45 minutes to drive. So, sometimes it’s like it’s, there’s rules and regulations to protect the license. So, I was kind of happy when she told me, “Melissa, you need an insulin pump.” And then I got one then 24th of Jan, 2019. I got my first insulin pump, and it’s been a game changer ever since then. But it’s constantly the thought of advocating and fighting for things. You have to justify to the professionals, “Why are you asking me this when this has been done?” And I think sometimes for people with arthritis, it can get to the point which it can increase your stress levels. I see it time and time again. 

Like the other day, I got asked about a blood test, which would have been done in March but people are like, “You’ve not had one.” But then, instead of you talking to me, you’re just saying, “Do this, this, and this.” I don’t know how many times people fight over a prescription that I see on Twitter. When medication has run out and you don’t think about okay, we’ve got public holidays, we’ve got bank holidays. Especially in the UK the prescription is so tight. So, say if its prednisone is a controlled drug, methotrexate is a controlled drug, so without a doctor, you cannot get it, or someone — it has to be regulated for you to obtain it. So, sometimes these things, I don’t know how professionals think about the impact it has on someone’s health when you’ve stressed them out, and then they end up having a flare up.

Cheryl:  

Right. Right. No, and yeah, stress can flare up so, so, many conditions. And a lot of times people just think of like external stressors like your job, or maybe family life, but it’s like no, the actual — obviously, anything can be a stressor that’s important to you. But navigating the health system, and being at the mercy of people who don’t necessarily always have your — in the United States — don’t always have your best interest in mind. I’m not talking of providers, I’m talking about the insurance companies. They’re trying to save themselves money at the expense of your health. I mean, it’s really egregious. And so, I mean, obviously, you know, we’d need cost to not be out of control, but it shouldn’t be at the expense of people’s, you know, the care plan that the doctor who went to med school for 10 years… Sorry, little rant, but, you know, the doctor sets the care plan, and the insurance is like, “Well, I don’t want to pay for that, because it’s expensive.” You’re like, they need it! Like what? So, I’m interested, yeah, so, you had to advocate to not only get switched care teams for your type one diabetes, but also, to get an insulin pump. And you said that, I think, you at one point, you said it would be like an 18-month wait, but you got it quicker? Is that right? Through your advocacy?

Melissa:  

So, it would have been an 18-month wait if I’d stayed at my local trust. So, in the UK, how it works is if you transfer someone, there’s like a priority list. So, for week one is like if they suspect you’re going to die, or if you have cancer, the new hospital had to see you within a certain amount of time. So, the new hospital had to see me within 18 weeks of the transfer, which obviously, this was before COVID. So, I think we got to that week 16, and week 18 I was like okay, this transfer should be happening. Where’s my name? Like, this can’t keep going on. My mom was like getting to the point she was getting very worried; my dad was a bit chill. He was just like, it’s okay, you’re okay, that sort of thing. But obviously, again, it goes back to that carers burnout for family. But type one caregivers, as I mentioned earlier, like the impact or the stress has on them as well, even though they don’t have the condition. So, eventually I got it, but it was just the proceedings before I got it. So, I went to the New London Trust. I got the insulin pump, I think, after Christmas, but just that first initial appointment and the fact that the consultant recognized, “Why are you not on an insulin pump?” the moment I walked in. And yet, when you try and say it to someone else, it’s like it’s falling on deaf ears.

Cheryl:  

Yeah, that happens a lot. I just interviewed someone a couple of weeks ago who had said — I was trying to remember which episode it’s going to be on — but where they were like, you know, the one rheumatologist was like, “You’re fine, there’s nothing wrong with you,” and then the next one was like, “You so obviously have — you 100% have psoriatic arthritis.” It was Maggie’s episode. And, you know, it’s like, they’re like, we can’t believe this didn’t get caught earlier. So, it’s like such a whiplash sometimes to be on the one hand, people are like, “Nothing’s wrong,” and on the other hand, they’re like, “Wait a minute, no, you need much better care.” And I think you mentioned the caregivers, and I think this is an interesting thing to think about when, with respect to all chronic chronic health conditions, whether it’s like type one diabetes, or rheumatoid arthritis, or lupus, that the people who surround us can have such an impact on our daily management, I do think. 

So, my only experience, I’m just gonna say, for the record, I did have gestational diabetes, which, from what I was taught, let me know if this is wrong, but is more similar to type one. And so, I didn’t have to take insulin, but I was able to — I was checking my blood sugars all the time and changing my eating and exercise patterns around when my blood sugar was going too high. But when you said three, I was like, I never — my problem was that it was going high, it was never going really that low. It was like 60 was low. But anyway, but point being, what I noticed is that like, there’s a big difference between conditions where you can constantly be measuring things like type one, you can measure your blood sugar’s at any given moment of time, and there’s a clear path of what to do, or there’s like options. Whereas sometimes I think what’s difficult in conditions like lupus or rheumatoid — I mean, they’re all difficult. Listen, I’m not trying to like compare easier to harder. 

But I think something that is difficult for caregivers to understand is that there’s not always a totally clear path. It’s not like, “Okay, I’m in pain and this is the silver bullet,” do you know what I’m saying? Like, there’s a lot of ambiguity, let’s put it short — long story short, a lot of ambiguity and these are invisible conditions. So, what I know causes stress for a lot of people is that their caregiver, or their husband, or their parent will be kind of like, “Oh, are you just — are you I’m exaggerating it,” do you know what I mean? Or, they’ll just be saying like, “You’re not doing enough.” Does that make sense? Do you have any advice for people who feel like, okay, again, long story short, there are people in their life that are important to them that just don’t really get it, or they’re not helpful.

Melissa:  

So, let’s see, before I answer your question, there is research to show that all diabetics make 140 decisions every day. As you mentioned, with any autoimmune like arthritis, lupus JIA, if I asked you to show how many decisions have been made already this morning relating to your arthritis, you don’t count it. But I sometimes think it can be hard for the caregivers to understand. And I think that’s where support networks come in play. Because obviously, they don’t know how you feel like. You’re all unique and individual. And I think sometimes, like, for instance, I had a chat with another lady. I was doing another focus group this week. And sometimes like, you can cramp up at any time. And it’s using that support network when you need it. If you feel okay, and you can’t see, because obviously, for instance, you can’t see pain. Pain, you can’t see it unless it’s visible. Write it down or just be like, “Okay, this is what I find difficult,” and then explain exactly why. But also, like, it may take them a bit more time because they maybe see you for a couple of hours, and then you go your separate lives that day. But also, be honest and open communication. And open, honest communication is important when you’re having a long-term condition. It can’t just be, you can’t just shut people out, because they won’t know how you’re feeling. 

I remember when I had a skin flare up, I basically took photos of my face and sent it to my rheumatologist because we were in COVID. I couldn’t see them, so I sent photos of my face. And I just gave a short description, “Okay, this is my face today. This is my face tomorrow,” like decent photos. Because sometimes if you write a diary, your hands, when you’re fatigued and you can’t write, take a photo. Photos are the way technology has evolved over the last 18-months. Send it to them, like, “Okay, I’m having a flare up. These are my symptoms. This is what I’ve done,” and at least with a photo they can see the imagery. Because I don’t know about you when you go to a rheumatologist and think, “Okay, I want to say this,” and I totally forgot. Or if you know you’re having an appointment, just go back to those points, but also, try and bring your loved ones into the appointment as well. I’ve been quite fortunate that when I see the diabetes nurse, I’ve been seeing her virtually. So, occasionally I bring my mom in and show her like the first few bits, then I might check her out in the politest way if there’s things I don’t want her to hear, or just have that space and like, “Hey, Mom, this is this is how I feel. Diabetes is this crap right now. I need you to do this, this, and this for me,” or, “If you cook this, can you please make sure you tell me like what you put in it so I can cut my carbs?” It’s just fair. It’s just that open communication there.

Cheryl:  

Yeah, yeah, I agree. And I think, sometimes, kind of the — I always talk about how social media is like a double-edged sword, you know, and it can be really great to go on social media and connect to other people with similar conditions who really get that feeling of isolation. But if you keep repeating, there’s a danger to repeating to yourself over and over, like, “No one understands. No one’s ever going to get it,” like then it can kind of become like a self-fulfilling prophecy, right. So, like you said, as the patient, you know, with the condition, what we can control is how we communicate to others in our life, what we, how we explain it to them. And I love your example of the 140 decisions a day that people with type one diabetes make related to their health. And I think that really illustrates the mental load and the cognitive load of these conditions. 

A lot of it reminds me of parenting too. I’m like, when Charlie was really little, I remember trying to explain to my husband, because I was the primary caregiver, you know, he was going to work and it was very, like, you know, a traditional setup. And I’d be like, it’s not just that the tasks, the tasks, like if you look at each task in isolation, like an OT, you know, you’re like ‘the task of changing a diaper’, you know, that’s not a difficult task, but it’s the thought that I have to put in constantly; okay, if I change the diaper before or after the nap, how does that relate to the feeding schedule? And oh, he’s this month old, are we supposed to start solids soon? And then, which solid should I start with? Should I — like, it’s all that, you know, and I think that’s the same thing with chronic health. It’s like, it’s not just that like taking your blood sugar level — let’s say you don’t have an insulin pump or whatnot, or you don’t have any sort of smart tech and you’re doing it the old way of just pricking your finger — it’s not just that that physical action is hard. It’s the thought around every single thing you put in your mouth, you have to think about that, you know. 

It was really eye opening to me to have gestational diabetes, because I thought I was empathetic about diabetes before. And it affects, yeah, it was annoying. I was like, wow, this has really taken the pleasure out of eating, you know, because I have to think about everything related to food. And that’s just the food part. So, anyway, sorry. Yeah, I think the more that we can explain to the caregivers, and also, the other piece of advice I give people a lot is sometimes people need to hear it from someone else. Meaning like, you as the patient, someone who might be too close to you to really understand, let’s say it’s a spouse. A spouse might need to hear information literally from a YouTube video or social media or a blog post, like something else other than just, it’s not just that you need to explain to them, does that make sense? Like, sometimes when they hear it from someone else, they realize, “Oh, it’s not just my partner’s being demanding, this is actually part of the condition.” So, actually, this all relates to advocacy, right? Because we’re talking about advocacy earlier, you’re advocating for your needs to your partner. Is there any other advice you might have or thoughts on communicating your needs, I guess, to important people in your life or to health providers? Like I know you talked about the advocacy example of getting getting better care.

Melissa:  

So, for me, if I’m being honest, when I did my uni degree, I didn’t, I only told a few friends. And then eventually, we had a lecturer who had type one. So, I was a bit more open, but I think it’s being open enough to say what you feel comfortable to share. So, like, for me, I have my emergency caller ID on my phone. So, it’s got like a medical ID. So, they know if anything happens to me, it says I’m a type one, “I’ve got lupus. Do not give me an insulin if I’m unconscious because that will just make things worse,” and then my contact details. So, have that on my phone. If I’m communicating to healthcare professionals, because as I said, I sometimes write. If it’s like, for example, if I’m seeing my rheumatologist the end of this month, so I’ll start maybe thinking about things I want to discuss on some paper, on my phone, in my phone just on the day and just thinking about, okay, what’s happened in the last few months? Where are we headed? What destination are we heading to next in terms of treatment plan? 

Because I think, yes, you are — how can I put it — yes, you are the driver in the driving seat. But you also need to know how is this going to impact you five months from now. Because they could say, for instance, I was offered Belimumab and methotrexate a couple months ago. I did my research; I read most of the papers. But then I look at I looked at my health over the last couple of months, there has been a few things that have happened. But then I thought, okay, if I was on methotrexate, would that increase or decrease my quality of life? Because obviously, being an occupational therapist in the National Health, I know some people felt sick after taking methotrexate, some people couldn’t work. So, it’s really thinking about, okay, yes, they’re giving you these drugs. But at the end of the day, how is it going to impact your life five months from now? And in the end, I said, at the moment, my quality of life has been the best that’s ever been, who’s to say this drug may not work? 

So, it’s important that you ask these questions. Don’t feel afraid to ask these questions because the medics are there to support you. But also, just have that inkling and think, okay, they going to want to start these drugs, but just advocating for yourself, like, what’s going to happen if they start these drugs? What literature, what research is there, that’s what they’re there for? And also, it’s okay to say, “Can I have some time to think about it,” as well. Don’t be quick to say, “Okay, let’s do this.” Let’s have some time to think about it. Because I think that’s important. I think the only thing with COVID is that it has impacted our communication because a lot of, I don’t know about your rheumatology service, they’ve had to change the phone lines. So, you send rheumatology a message and then someone will get back to in a few days. Or in my one I tend to, I’ve got like a portal. So, I just send my nurse a message and then they’ll get back to me. So, that’s something. 

And always write it down because sometimes you may have brain fog and you may forget your question, which is okay. “Oh, I wanted to ask this,” just write it down or even just a quick, “Siri, can you remind me of this.” At times I’m guilty off — I think you heard my watch a couple of minutes ago just —

Cheryl:

Oh, yeah. 

Melissa:

Just yeah, things like that. Or Alexa, I know people use Alexa to take their medication like, “Alexa, can you tell me to remind me of this medication to take,” or something like that, things like that. Just remember that communication can be open. It’s not one size fits all.

Cheryl:  

I love that. And I have to write stuff down or else I don’t remember it. And I use tons of reminders on my phone. I have reminders that are like Monday to Friday reminders, or reminders that are every day, or like from my injectable medications, you know, once a week reminders. So, I totally yeah, those are all such good pieces of advice. And along the topic of just general advice, one of my favorite things to learn from people is what would your advice be to somebody newly diagnosed — let’s just take lupus, for example — just what’s, I know, this is not medical advice. This is not occupational therapy services. This is just, you know, what would you say to somebody who says, “Oh, my gosh, Melissa, I just got diagnosed with lupus today, I’m freaking out.” Like, what kind of words of wisdom or inspiration would you have for them?

Melissa:  

I would say to them, okay, you’ve been diagnosed with lupus, but your life doesn’t have to change because you’ve got a diagnosis of lupus. I would tell them like, yes, you’ve been diagnosed with lupus. But lupus does not define what you do. I think it’s important that when you have a long-term condition, you still are able to do things you want to do in life. Yes, it may need some adapting some, some flexibility, but you can still do it. Like, for instance, I went to Australia for two weeks before COVID hit. There was some pre-planning that needed to take place. But I managed to do it. So, I think it’s just trying to — don’t sell yourself short, would be one bit of advice. 

The other thing I would say is you mentioned earlier on about fatigue management. If you feel like, I know what some people have done is they write like what their lupus is on a good day, and what is up on a flare up day. So, like write a plan of like, when it’s on a flare up day, the tasks you can maybe do. And when you’re not flaring, the tasks that you could achieve. And then just compare and contrast those two activity days between a flare up day of tasks you would want to do and a non-flare up day. I would say seek support. I’m quite fortunate to have a lupus support group on my phone. We meet up now and again. And occasionally we’ll have meetings in London, so that’s nice. And again, social media. I use social media, but not as much. I use it more for my diabetes. I’m quite passionate because I’m involved in a few focus groups and young adults groups. So, I can connect with other people. 

And also, the other thing I would say is, let your loved ones and family members in when at the start of this diagnosis journey, because it’s not just affecting you, it’s affecting them as well. The one thing when I got my second — my first insulin pump, my nurse said to me, “We’re taking home this new baby,” and I was like, “Baby?”

Cheryl:

Oh, wow.

Melissa:

It being such a small device. And it is true. Like, as a family with it, there are days where we loved the pump, where it was great. And when those days we wanted to throw it out the window including myself. But to nurture the pump, there was times we called it a diva when it was alarming, but it’s accepting that this condition doesn’t define who you are. You can still live life to the fullest but it just needs preparation planning. And it’s okay to say, “No, I can’t do this today.” What I did when I was younger is when I got diagnosed with diabetes, I tried to read everything. And my mum and dad, they were like, “Okay, you need to slow down. We’re doing this as a family. It’s not just you.” So, when I got my journey, so when we went on a holiday pre-COVID on a cruise, my dad was the one that would hold my diabetes kit on his seat because, you know, the men always have seats.

Cheryl:

Right, right.

Melissa:  

And I was wearing a jumpsuit at the time. So, there’s no way to put anything in the seat. My mom would be the one who would clip my pump back in if I couldn’t clip it in, and my sister would be the one that has the glucose on standby. So, find many roles for them in terms of lupus management or diabetes management so they can feel part of your condition as well. But remember, they are there to support you. And also, your healthcare professionals as well. There will be some points in the journey where there’ll be some frustration and anger, but find ways to alleviate that. I think I did do a bit of boxing and that did help, but just let them know how you feel. Like, even again, if you don’t feel like talking, just send them a text, or video, or voice note, as most of us are doing these days. Like, “Mom, this has been a crap day. This is what’s happened.” Yeah.

Cheryl:  

I love that. And you know, because we have a little bit of extra time, I do want to indulge in one more question which kind of ties into what you’re talking about with the frustration and the emotions, the emotional ups and downs. I think I always talk about uncertainty being the most difficult thing for me to cope with. Because I can cope with the pain, I can cope with the fatigue to a certain degree, right. They’re not fun. But the uncertainty has really, is what I realized — well, I and my therapist helped me realize — is what caused a lot of anxiety for me, because not knowing the future. And like you mentioned, there’s good days and bad days, right. And you don’t always know, going to bed tonight, if tomorrow is gonna be a good or a bad day. You might have little signals from your knowledge in the past. But, you know, the uncertainty for me personally is one of the hardest things to cope with. And I’ve been able to cope with it through Acceptance and Commitment Therapy, and just realizing it’s not a solvable problem. Uncertainty is just a fact of life, you know, so stop trying to fight it. Stop trying to find certainty, because you’re not going to ever find it. So, it’s weirdly a freeing thing. But so, that’s my little journey in a nutshell. But what are some of the things that have helped you cope with either the uncertainties or just the things that are emotionally challenging for you about having chronic illnesses?

Melissa:  

Well… Wow, Cheryl, thanks for putting me on the spot.

Cheryl:  

That could be a 75-minute episode by itself. Yeah, I know.

Melissa:  

So, it’s good you mentioned about that Acceptance and Commitment Therapy, ACT, which I think has been used quite a bit in rheumatology, and it’s been mentioned by the British Association of Rheumatology. And it’s something we actually deliver in our service, so that’s quite great. 

Cheryl:  

It’s my favorite. I’m totally biased towards that just because it works so well for me. And I’ve seen it work for others too, not just anecdotal, but yeah. The evidence is really good for chronic pain and chronic illness. But anyway, yes. Continue.

Melissa:  

I think for me, the uncertainty, I think sometimes is, that’s where I do gratitude. So, every night before I go to bed, I do five things I’m grateful for that day. And even if it’s something that, okay, the smallest thing. Like, this week, I put, “Someone said to me, ‘You’re such a lovely person, and I value your opinion'”, or the other one is I actually managed to do an hour and a half of the gym. It’s practicing gratitude. What I’ve thought about my last few months of philosophy is don’t worry about tomorrow, worry about today, because tomorrow is never guaranteed. If a flare up does happen, it can be — there’s ways to manage it. It doesn’t mean that life will stop, it may this mean that to get to your end goal, it might take a couple of weeks. But you need to just remember that if we worry about everything, it’s just going to impact our health and well-being. So, for me, it’s just, “Okay. This has happened. Okay, let’s take a breath. But let’s make the relevant calls if we need to make those calls. And this is how we’re going to approach it,” and then just try and think, “Okay, if I stress, what’s the implication of stressing? I need to relax. And then we’ll try and work out how best to do it.” 

But then except, okay, it’s happened, you can’t change it. So, yeah, things like that. But also, remember that everyone will have a setback in life. Maybe it was just not that time to get to that destination. And this setback — maybe just for a small part of our seasons, we go through different seasons in life. And there may be a reason why that has happened. We don’t know. But I guess it’s just taking a step back, being grateful for what we have. Like, my mom always says she’s grateful for life. Because during COVID, I don’t know how many people we’ve lost in the season of COVID. But just being grateful for breathing in that air. Because there’s a lot you can see, like people going into hospital, but just taking that time to pause and reflect, like this can be fixed. Or this can be — not ‘fixed’, fix is probably not the right word, but there is a solution to this. Yes, it may stop our end goal, but we can find a solution to resolve the problem.

Cheryl:  

That’s interesting. Yeah. And one of the exercises in ACT is called creative hopelessness. And it’s actually about acknowledging — well, so, first of all, thank you for sharing that. Sorry, I’m like going off in five directions in my brain. But yeah, sometimes it’s very comforting to say like, you know, as Marie Forleo says, “Everything is figureoutable,” like everything, you know, every solution has — every problem has a solution. So, other times for me, it’s also, helpful to say, “Maybe this is not a solvable problem,” like maybe this is not fixable, but I can cope with it. I have the capacity to tolerate this and still turn towards what’s important in my life even if this problem doesn’t go away, you know. Even if pain — like chronic pain, unfortunately, there is not a way to fix chronic pain for everyone right now. Some people, the best that’s going to happen is getting your pain from an eight to a five or getting it from a five to a three. And so, then being able to say, “I can cope with that. I can cope with a life that isn’t at zero for pain,” you know, and that can also, be, again, empowering. 

It’s weirdly empowering, because I’m like a perfectionist. So, I want to get everyone to a zero, you know, I want to get myself to a zero, you know, but hardly anyone gets to go through life every day with zero discomfort or pain, right? Whether it’s like logical or, you know, it’s not the human condition to just have a perfect, carefree, easy life. And if you did, you know, and then, I guess, more power to you, but most of us have to get used to suffering on some degree. So, that’s another thing that that can be helpful for it. But I love what you said about gratitude. Because that’s something that I grew up in a family where every night for dinner, we would go around the table and everyone would say, we’d just call it ‘You’re grateful for’, we just call it ‘The grateful for’. So, everyone was saying one thing that they’re grateful for that day, you know, and it was just a great practice, like, bringing you into what is, yeah, what’s going well in your life. Oh, sorry. I forgot to close my door. People keep slamming the door in the background. Okay, so, now we’re at the time to wrap up a little bit. But is there anything else you wanted to share with the audience about what we covered today or anything else?

Melissa:  

I just want to say it’s been great doing this podcast with you. And I look forward to hearing it. And I think big shout out to First Arthritis Young Adults Panel, big shout out to the Diabetes UK Young Adults Panel, and anyone with type one diabetes, or lupus, or any form of arthritis, really. And a big shout out to my mom, dad, and sister for supporting me on this journey. Dad, this one’s for you. Unfortunately, yes, this podcast is in memory of you. Thank you.

Cheryl:  

That’s so sweet. You’re I think you’re the first person to do a shout out to their family. And I’m sorry that your dad’s not with us anymore. But that’s really, really sweet. And I’m sure many people listening are going to want to follow you or learn from you, and I’m gonna put everything in the show notes, but where do you suggest that they follow — where are you online, in other words.

Melissa:  

So, I’m online on Twitter, so, it’s @Melissa_Chieza. I’ve got a little dash on the bottom, Chieza, so that’s C-H-I-E-Z-A. And then I’m on Instagram as @Melcee97. But yes, I hope you guys stay safe, stay well, and just pick up a few tips, really, in this podcast. Yeah.

Cheryl:  

No, it’s great. You’re very, like, you have a very calm energy compared to mine. So, I’m always like, just in awe of people who, you know, I don’t know how to say it. I’m like chaotic energy and your energy, to me, externally — maybe internally you feel very chaotic — but your external energy is like, okay, I feel if you were my occupational therapist, I’ll be like, “I trust her. She knows what she’s doing.” So, thank you. You’re calm, cool and collected. That’s what we say in the US. I don’t know if they say that in the UK.

Melissa:

I like it. I like it. 

Cheryl:

Yeah, that can be your new tagline. I’m calm, cool and collected. Oh, just realised I wasn’t following you on Twitter. So, I’m rectifying that now. Well, thank you so much. Yeah, and I will put this out into the internet. We’re almost at 50,000 downloads of The Arthritis Life podcast at the time of this recording. So, I think you’re gonna put us over. So, thank you for being part of that. But we’ll talk to you later.

Melissa:  

See you later, Cheryl. Thank you so much.

Cheryl:  

Thank you. 

Melissa:

Take care. 

[Ending music] 

Thank you So, much for listening to today’s episode. This episode is brought to you by Rheum to THRIVE, a membership and support community where you’ll learn how to develop your own THRIVE toolbox So, you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. 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.