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Blog, Podcast

How to Advocate for Yourself as a Patient

August 25, 2020
45 min read
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When you get diagnosed with something like RA, you end up having to learn to advocate for yourself in *so* many different situations:

  • Advocating for doctors to take your concerns seriously
  • Advocating to friends and family that you are, indeed, sick even if you “don’t look sick”
  • Even advocating in formal governmental advocacy efforts, such as lobby days at your state and national capitol to promote policies that protect you and other patients, such as the removal of unnecessary and unethical barriers to medication

On this episode of the Arthritis Life Podcast, Effie Koliopoulos shares her best tips for advocating for her needs as a patient during doctor-patient interactions,  as well as through formal legislative advocacy.

Copy of Episode Effie x

Effie shares many anecdotes and nuggets of wisdom about how she’s learned to advocate for herself over fifteen years of living with rheumatoid arthritis.

She also shares examples of finding a good fit with a provider, and how to get involved in legislative advocacy on a national scale.

Effie Koliopoulos is a freelance writer and rheumatoid arthritis patient advocate. She created her blog Rising Above Rheumatoid Arthritis in 2016, after being inspired to share her story more publicly and connect with others after undergoing a total knee replacement.

Currently residing in Chicago, she is working on her debut children’s picture book, enjoys creating video content for her YouTube channel and other projects.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others develop tools to navigate physical, emotional and social challenges so that they can live a full life *despite* arthritis. 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:

Detailed breakdown of show:

  • 01:30 – Effie’s Diagnosis Story.
  • 03:30 – Effie’s advice for students with rheumatoid arthritis.
  • 06:06 – Examples of when Effie has had to advocate for herself and be actively involved in her care during medical appointments.
  • 08:40 – Examples of Effie advocating for her needs when prescription errors occurred. 
  • 13:15 – Effie’s experiences with getting second opinions and finding a good fit with a doctor.
  • 15:30 – General advice for patients to learn to advocate for themselves with medical professionals.
  • 17:14 – How Effie & Cheryl learned not to downplay symptoms, and how they confront fears around changing medications.
  • 21:00 – Effie’s advice for formal legislative advocacy at your state or national capitol, and why personal stories are so important.
  • 27:21 – How Effie has advocated for invisible illnesses, and Effie’s experience being accused of “faking” her disability (including someone calling the cops on her for using the disability placard).
  • 31:00 – What Effie wishes healthcare providers knew or did better.
  • 35:00 – The impotence of getting medical guidance from the doctor rather than the internet sometimes.
  • 36:05 – What Effie wishes the general public knew about rheumatoid arthritis.
  • 38:00 – Effie’s final words to anyone newly diagnosed: take advantage of the community.

Full Transcript:

[00:00:00] Cheryl:
[Introductory music]

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. Today, I am interviewing someone named Effie Koliopoulos, and she has some amazing advice to share about how to become an advocate. And when you get diagnosed with something like rheumatoid arthritis. You have to learn how to advocate for yourself in medical appointments, but also you can engage in some larger scale advocacy efforts like through the Arthritis Foundation or other large entities that help with legislative advocacy at like the national and state level, which is really, really fascinating. So, Effie shares her own personal journey and we both discussed instances where we learned how to advocate better for ourselves as patients. So, I hope you guys enjoy this as much as I did. 

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. 

 Hi Effie, thank you so much for coming on the Arthritis Life podcast today. 

[00:03:24] Effie:
Thank you for having me. 

[00:03:25] Cheryl:
Can we just start off by having you tell me a little bit about yourself, your age, and a little bit about your diagnosis journey?

[00:03:33] Effie:
Yeah, so I’m 33. I was diagnosed with rheumatoid arthritis at 18-years-old. For a few years prior to that, I was experiencing symptoms, but doctors wrote it off as growing pains and nothing really serious. So, it wasn’t until three years from me experiencing symptoms around 15, 16, till I was diagnosed at 18. And I didn’t start treatment until then, so I think that impacted my outcome as well, as they do say that the first two years are very crucial in starting a regimen, whether that be medication, dietary lifestyle changes, whatever that is. 

So, I also got a second opinion at Mayo Clinic. They confirmed that my diagnosis was actually juvenile idiopathic polyarticular arthritis, but I usually tend to not know which way to go at times because some doctors say, you were diagnosed at 18, so it’s technically rheumatoid arthritis now. Others are like, you started having symptoms as a younger teenager and it’s technically juvenile arthritis. So, I tend to just say rheumatoid arthritis for the sake of all that, but that’s pretty much my story in regards to how I was diagnosed. 

[00:04:44] Cheryl:
Nice. And what’s like a typical day in the life for you these days?

[00:04:49] Effie:
These days, I’m doing pretty well on the medication I’m on. I’m currently on methotrexate. I was taking prednisone. I did wean off that. However, I take it sporadically now. I have some flares. And I’m just trying to find my little avenue of if I’m going to add in something else or not. I’m in limbo right now with testing and all that. That’s how that goes. And yeah, I freelance write and I work part-time.

[00:05:14] Cheryl:
That’s great. A lot of times people ask me, like, how to cope with being a student like in college or high school while balancing having RA. Do you have any tips for that? 

[00:05:26] Effie:
I think the best thing for me was to reach out to my learning center and ask for assistance and they were pretty good about you coming in and talking to them about your needs. So, at one point I had a note taker. I had them give me like a recorder. So, I used those tools for a little bit and talking to my professors before college started. If I already knew my schedule in advance, I would email them a week before school and just tell them my situation. And then, also I tried to plan my schedule to be really fluid. So, I was a commuter student. I didn’t live on campus ever. And I really wanted my schedule to be easy, so I went Monday, Wednesday, Fridays, or — I would not recommend this — I went Tuesday and Thursday all day at one point, like, morning to night, because I didn’t want to commute the other days. 

But I guess it’s just finding a schedule for you and spreading things out and also not feeling the pressure to graduate on time. I know many colleges are in the quarter system or semester. My school is on quarter systems. So, we had shorter breaks in between and longer winter breaks. If you have to graduate a year later, a quarter later, semester later, it’s okay. Because you don’t want to fail in your classes. You don’t want to do poorly. ‘Cause I remember my last semester of college, I got like a B-minus or a C in one class, but I was so tired. I pushed myself a little too much. 

[00:06:48] Cheryl:
That takes a long time for many patients to figure out, you know, what is that balance of can I do a full day versus a half day, versus three quarters? So, I think those are a lot of practical tips. Giving yourself rest days in between school days, potentially in the long run of your life. When you’re 40 years old, you’re not going to look back and wish that you had graduated in four years versus four and a half or five. If it takes a little longer, that makes sense to just give yourself that breathing room.

[00:07:16] Effie:
Yeah. It doesn’t really matter. And I know when I graduated back in 2009, the market for jobs wasn’t that great either. We were in, you know, a bit of a recession at the time. So, I feel like even if I did graduate a year later, it wouldn’t have mattered, 

[00:07:30] Cheryl:
Yeah. Yeah. One of the things that I admire about you from seeing your social media is that you’re such a strong and passionate advocate. And I know that for a lot of us, you know, it’s a journey towards learning how to become an advocate. Not everyone is like I get diagnosed and then one week later, like, I’m gonna advocate for myself. So, I’d love to know, like, sometimes a few examples of when you’ve had to advocate for yourself in your journey. 

[00:07:57] Effie:
When I first started out, obviously, the rheumatologist would test you for certain things and I just went along with it. But I didn’t really ask many questions. I eventually was tested for Lyme four times, Lyme disease that is. Because I, when I was a teenager, I was in a lot of woodsy areas. I did go camping a lot, canoe trips. So, that was a concern for me as I started talking to more functional doctors and nutritionists who were well-versed in Lyme disease. And I was tested. It came back negative each time. Eventually, I just let it go. I just accepted that I have rheumatoid arthritis and that was it. 

Because it was a little bit of an anxiety for me to know that maybe something else could be going on, as we know that people are often misdiagnosed, right? So, I started more on a journey of investigating and answering like my own questions and asking doctors questions. Because sometimes I feel that is needed as a patient, you need to know what the tests they are running are all about. So, when I found a rheumatologist who would literally sit there with me on my appointment and point out everything that was going on with my test, that was really helpful for me. 

So, speaking up about what the test results were all about and what their meanings were helped me as patient and my family member was really going on and why he was prescribing medicine. Lately, for example, my hormones have been a little off. So, I mentioned to my rheumatologist, “Hey, can you test my cortisol,” or, “Can you test my estrogen and progesterone levels,” as I’m an older adult now, so I know more about these things rather than when I was younger, they would always tell me, “You’re too young for those types of tests,” but I don’t think I necessarily was because hormones play a big role as a teenager as well as we know, right? Puberty, menstrual cycles as young adults and women. I feel that was something I’ve really learned to speak up about. 

[00:09:48] Cheryl:
That makes a lot of sense. Patients are the experts in their own experience and in their own care because you’re the one that has to live with it on a daily basis. I was diagnosed when I was 20 and I had a similar experience where, like, at that point when you’re a late teen, early 20s, you don’t necessarily see yourself as in charge of your care because you’re used to being treated as a younger person; so, it does take a while. And it sounded like you had some experiences with having to advocate yourself when your Enbrel was not being correctly filled. Can you elaborate on that story? Because it’s a good one. It’s a good one for advocacy of bad experience. 

[00:10:24] Effie:
Yeah, so this is one of my bad and ugly experiences, a rheumatoid arthritis one. So, in 2007, I was having a little bit of a flare and I was on Enbrel at the time. That was the only medication I was taking along with Ibuprofen. So, one week the medicine didn’t come on time to the pharmacy I called them and I’m like, “I’m in a flare. I don’t have my injection for this Friday,” because I was doing it on the weekends at that time. And they were like, “Well, we don’t have a refill from your doctor.” But at this time I was on it for about three years and the pharmacy knew me, they knew my doctor. So, it wasn’t like I was a new patient or someone that they didn’t know where they would probably need information, you know, before they filled it. They tried getting in contact with my doctor. I tried to get in contact with them as well. I couldn’t reach anyone. 

So, I actually wasn’t on Enbrel for two weeks by the time it was given to me. And at that time I just picked it up from the pharmacy because it was five minutes from my house. I didn’t get it delivered. I didn’t know what to do at that time. And my elbow was impacted after that, I think, a little bit because I do have damage there now. And I noticed that moment in time when my elbow was flared. It was the catalyst for more issues to come after that. So, I eventually was able to get my medicine, luckily. And it was a scary time for me as well, because that was the first time I was experiencing really bad swelling in my elbow. And because at first, just my hands, my wrists were impacted, like the first two knuckles on either hand, like, symmetry, right? As an occupational therapist, you know that. And so, those were things I was used to already, but the elbow was more of a shock that I had to get used to, and it was a little traumatic experience. 

And then, some years later, I had another experience where I was having a flare and I was bedridden for a week. I couldn’t get in contact with this doctor again and I didn’t know what to do. And I was seeing a functional doctor at the time and they were like, “I can write you a prescription for Tylenol T3,” and all these other things that you can take. So, I didn’t really know what to do either. And at the time I didn’t go to the ER. I probably should have, but going to the ER is tricky too when you have an autoimmune disease because sometimes they do things that are not supposed to be done either. But eventually, I calmed the flare down, but that was also another catalyst to when I had knee damage. So, it was just like these massive flares, and luckily, knock on wood, I don’t have them anymore, but those are the two I think that really sparked my issues in those two joints. 

[00:12:51] Cheryl:
Yeah, and I think when I’ve had these, what I would consider, like, unnecessary medication delays, like your Enbrel one, that’s happened to me before with Orencia. And I think it’s such a helpless feeling to feel like you know exactly what you need at that moment. And your doctor knows too, but there’s all these barriers. And I know some of them have to do with like ethics, like they want to make sure that they have the correct documentation, but there’s like a lack of common sense to some of these barriers where you’re like, okay, I’ve been on this for three years. 

I’m like, where, was the failure in the system that made this happen? And it was, it’s not your failure, right? But it’s at the end of the day, you’re the one that has to suffer. So, it’s like I’ve learned through those experiences that it’s even if it’s someone else’s job is supposed to be to send in the refill, you as a patient have to end up double checking. The worst ones are when you need to do blood work. You figure out, oh wait, you, we can’t renew your prescription until you do blood work. And then, you’re like, okay, it’s like Saturday and the labs aren’t open or they’re just — I think we’ve all, at least anyone who’s had this disease for more than a few years can just rattle off examples like that, and they add up over time. It’s becomes the straw that breaks the camel’s back sometimes. 

[00:14:07] Effie:
Yeah, and insurances are involved too. You get pre-authorization, and obviously approval for all that. So, there’s steps that are involved, and I use, yeah, now my rheumatologist and I’ve had other rheumatologists in the past say, “Do you need any more refills?” And, as a patient, yeah, you do need to follow up with that. I always do. But luckily, like, now I think my rheumatologist, she sends in four months worth of injections. So, like the pharmacy was like sending me like boxes. I was like, okay. So, I have like boxes at home of just injections. It’s like, don’t you feel like a pharmacy now? I’m like, a little bit. It’s just like having that safety net and that, like, all your stuff there at home with you is just comforting. If anything does happen, you don’t need to worry about it. 

[00:14:50] Cheryl:
And I know that some of your experiences with these errors have led you to, quote unquote, ‘break up’ with one doctor or seek another one. Can you — a lot of people, I’ve found out through working with like newly diagnosed patients, a lot of people don’t know that you can get a second opinion and you can switch doctors. Can you tell us a little about, yeah, sometimes they just literally, it’s like their first medical experience, right? They might have — I remember I just went in for my annual physicals, before I got diagnosed with RA. Then suddenly you’re like a professional patient. You don’t know the rules. It’s like you’ve traveled to a new country, and no one teaches you the rules of this new culture. Can you tell us a little bit about experiences with, quote unquote, ‘breaking up’ with a doctor or seeking a second opinion? 

[00:15:34] Effie:
Yeah, I mean, the second opinion came mainly from my parents, because I was underage at the time. So, they took me, obviously, to Mayo Clinic. I didn’t take myself.

[00:15:44] Cheryl:
Yeah, you were like, I demand Mayo Clinic immediately. [Laughs] Yeah. Yeah. 

[00:15:48] Effie:
No, yeah, so that was out of my control. I didn’t really know that you could go and get a second opinion, or a third, or a fourth, or a fifth at the time, even. Some people do that. But, at this time, at that point, I needed to take action fast, so I couldn’t really go to Johns Hopkins or Cleveland Clinic. And I guess with this doctor that I was seeing, they were, he was referred to me by Mayo Clinic. And I was with him for several years while I was on Enbrel. And there was many times I was doing well and I felt comfortable for a long time. So, I didn’t really want to myself find someone else. 

And until I started experiencing really bad things, not being able to get in contact with them for the medication. And then, yeah, not being able to get in contact with them during a huge flare either. So, that was kind of the camel that broke the, whatever, that thing. I don’t even know. The straw that broke the camel’s back. Yeah, yeah. So, I was just like, I probably should find someone else. And there were a lot of doctors that I wanted to go see prior to this other doctor, but they weren’t taking patients. But it just so happened around that time that I found someone new. He was great. And then, the person that I did want to see in the beginning years, I recently see now and she was accepting patients when I needed to switch when my other doctor was retiring. But yeah, the breakup just happened. I, you know, just hopped and left. I didn’t really give them an answer. You don’t really have to. You don’t.

[00:17:13] Cheryl:
Yeah, I know a lot of people feel maybe shy or I feel like a lot of people are less confident advocating for themselves. So, what advice do you have for patients who are like, “Oh, I don’t, I can’t speak up. I don’t have the confidence. You can do it because you’re special. I can’t do it.” What do you, what would you say to them? 

[00:17:31] Effie:
I feel anyone can speak up for themselves. It really just takes time to go on a self-discovery journey and figure out what you need from a doctor. And once you find out what you don’t need, you’ll know who is your fit or not, if that makes sense. If you see it, if you meet with someone the first time and you don’t really feel a good vibe or you don’t think that they can really help you, then you can move on to someone else. I feel like the number one thing as a new patient going into all this is to have a family member or friend that you trust come along with you. Sometimes we don’t really want people that we know very well around this situation. We get nervous. We don’t want to express our emotions. 

I know for me, sometimes I’ll be like, “You guys can stay outside,” or I didn’t really want my mom or my dad to come in a lot of the time. I was a little weird like that, but eventually I let them come in because I needed someone else there to either take notes, have another ear to hear something that maybe I didn’t hear and I missed while I was either nervous talking about something or whatever. So, there’s always someone that should be there, I feel, to help you and maybe even be like, “Hey, when you’re talking to the doctor, you forgot to mention this.” ‘Cause that’s happened to me several times where I would go in and talk to the doctor and say everything. But then my mom’s you’re forgetting this and that, because when we got there, she was like, make sure you say that. I’m like, “I will. I will.” And I didn’t because I was shy or nervous or I wanted to downplay my symptoms. 

[00:18:56] Cheryl:
That was the biggest one for me. And I, my doctor took her a while to realize and for me to realize, optimism is a good trait, right, to some degree. But if you’re like, “Oh, I’m hurting more than usual, but it’s probably just cause I overdid it last week,” or, “It’s probably just because,” like, I kept making excuses when one of my medications was starting to wear off and it was like I was in denial and I didn’t want to admit cause I was nervous about trying a new one. So, yeah, having that relationship and that self-awareness to know, like, people get afraid of being called a hypochondriac. So, then you sometimes you actually swing the other direction and you downplay too much, you know? So, my doctor had to realize, no, like this amount of pain you’re in is not acceptable. I feel we can control your disease activity more as opposed to me being like, “Oh, just push through it. It’s okay.” 

[00:19:47] Effie:
I resonate with that because recently my doctor was like, “You’re relatively controlled, but you can be better. And it’s up to you. If you’re going to want to do that. You can stay the way you are, have some residual inflammation and parts around your body, but I know that you can get better and be better.” And I know when I downplayed in the beginning years or even sometimes recently, it’s because I was afraid to go on another medication. I didn’t want to go on that journey again. Because when we do have to change medications and go on that trial and error journey, it’s a lot, and it’s traumatic because you have to start anew. And then, you get used to your medication that you’re taking, but now you have to take something else. And then, other times if my test results were doing well, like my CRP, my sed-rate was low, they’re like, “Oh, but you don’t look good,” so that they can kind of tell, oh, I may say I’m fine, but the test results sometimes showed that I was fine, but they, during a physical, can see that I wasn’t. So, that’s why sometimes they don’t always rely on that either.

[00:20:48] Cheryl:
It’s like a combination of your self-report, and their physical exam, and the blood work. And I think that takes a while for people to realize, because what I’ve noticed, especially with newly diagnosed, is that we tend to think of like blood work is the most scientific right? Because it is something that’s climbing out of your body. So, it’s logical to think, oh, the blood work is like the most important. But actually, even for the diagnosis, they need the family history, they need a physical exam, blood work, and then patient report. That’s four separate pillars with blood work’s just one of those. 

In general, what are some do’s and don’ts that you’ve learned over the years for advocacy? Or any — I think a lot of times people, for better or for worse, they want to learn from a mistake. Is there a mistake you made? What would you do different? Or, what are some things that worked really, really well for you? You mentioned writing down your questions before an appointment. That’s a great thing to help you not get overcome by this feeling of ‘I just want to downplay my symptoms’. You’re like, no, I need to say these things. Is there any other do’s and don’ts? 

[00:21:47] Effie:
Well, yeah. And adding on to what you said, I would say, if you write up your questions, keep them out when you go there, because sometimes I have written detailed questions and I would keep it in my pocket and I wouldn’t take them out. Sometimes, doctors, they are short on time. Some see you for 15 minutes, others 45. So, if we’re running short on time, I didn’t want to take them out and then have them be like, “Oh, just do what I just told you to do,” so I think keeping them out so you can see them and not be nervous to ask, I think, is helpful.

[00:22:20] Cheryl:
Sometimes people think of advocacy as formal, like going to your state or national and that’s definitely — representatives, like going to Washington DC for our national representatives, or they think of it as like the small moments, like I advocated for myself at this appointment or with my spouse or with my parents. So, it is a broad word, but yeah, I know you have experience with the formal advocacy too, talking with your congressmen and stuff like that, or congresswomen and men. So, I would love to hear that, too. 

[00:22:52] Effie:
Yeah, I’ve done it a couple times. I’m not like super experienced. But from what I know, I guess doing your research and being informed your prior and taking your notes, just like you would with your doctor, because it’s important that you have all your talking points ready when you go speak to someone about unmet needs within your community or your own story so you don’t forget anything, because they’re also a little bit on a time crunch. And they talk to many people throughout their days as well, just like doctors do. So, in that sense, be short, concise, specific with what you need. 

And just be honest with your story as well, because honesty and authenticity is what matters in our stories as well. And you don’t need to downplay when you talk to a congressman or woman, because when they hear your stories, that’s when sometimes change can happen. So, that’s an important thing. And, just begin. You don’t need really to have a degree in anything or be a specialist. And you, can just be a normal patient as well. Sometimes people think when you go and do all that stuff, you need to be an expert, but your story is an expert, too. 

[00:24:00] Cheryl:
I’ve, yeah, I remember at one of the trainings I did to meet with my representatives, they said, everyone thinks that they need to bring all these facts and figures, but the representatives get so tired. Imagine if you had 15-minute back-to-back meetings for eight hours and each time people are handing you all these charts and graphs and usually eyes would glaze over so they can see the, yeah, the personal storytelling is so key. And that’s what our brains are wired for, right, is to listen to stories. So, I think that’s, it’s so key. And I’ve asked you in advance to give me some of your favorite resources. I’m going to put those in the show notes, but can you speak a little bit about other organizations that you found helpful, like the Arthritis Foundation? I’m not trying to give you a leading question here.

[00:24:47] Effie:
Yeah, so the Arthritis Foundation is the one that I mainly have worked with when it comes to my local state legislative levels. Like, when I was in college, I interned for them and I worked for them a little bit as a PR intern. But that’s when I first went down to Springfield, our state capitol, and advocated for arthritis. So, that was interesting. And then, several years went by. I didn’t really do much with it anymore And then, like I had mentioned to you and many others who follow me, I had a knee replacement 2016 that I just kind of fell back into it in a way. And I ended up finding something called Advocates for Arthritis, and they’re based out of the American College of Rheumatology. And they have a conference in Washington, D.C. that you can apply for and go talk to people on a federal level. And that was something I did last September and it was pretty fun. 

[00:25:39] Cheryl:
Wait, I was there too! 

[00:25:40] Effie:
Oh, you were? 

[00:25:41] Cheryl:
I think I maybe saw you in line but I didn’t know who you were at the time. Oh, my gosh. That’s so funny because that was my first time doing it too.

[00:25:48] Effie:
Yeah, me too. 

[00:25:49] Cheryl:
Oh, my gosh. 

[00:25:51] Effie:
Yeah. I went with my mom actually and she came with me. And so, yeah, I mean it was nice to share my story a little bit with the people that we met. It was a little intimidating because I’ve never done that and that scope, because we go into groups, you remember you were like with a doctor or with someone else. But yeah, like you said, it’s nice to bring the facts and figures ’cause that’s what they want too. I’m not going to say they don’t, but also following it up with your own story because otherwise, why are you there? That was something really interesting. 

And then, when I was at the legal health conference, I actually learned about, I guess something called Resistbot by someone who was hosting a panel advocacy, I think it was Mamas Facing Forward, Mariah. She shared this because she’s really knowledgeable about advocacy and all this, and it’s just like a little app that you can literally send representatives in under two minutes a letter, and that’s really nice too. So, you don’t necessarily need to mail them anything, or you don’t need to meet with them if you can’t physically, because it’s not easy to meet with people one-on-one either. And a lot of the times they’re not there. I remember when we were in Washington, DC, I only met one Congressman, the others were just the assistants.

[00:27:08] Cheryl:
Yeah. One of the things I learned in one of the trainings is that sometimes the legislative aids or assistants can have the most impact on the legislator or the congress person. So, it’s good to make sure that approach those meetings with the same energy that you would the other ones. I think it’s normal to get disappointed if you can’t meet, like, I, yeah, I didn’t get to meet with any of my Washington state actual reps in D.C. I have met with one of mine. In her local office. It’s a lot easier to get local meetings if they’re not in session. 

But yeah, I was never personally like into politics. I would follow it, but it wasn’t like my personal passion is politics and political engagement. And so, I feel like I’ve really gotten into it as a patient, but I never would have expected 20 years ago, if you told me like, you’re going to be going to Washington D.C. every couple of years. And are you the same, or were you already interested in —? 

[00:28:01] Effie:
Oh no, I was the same. I obviously, I was always like philanthropic. I did all that stuff, but I didn’t really find myself obviously going to Washington, D.C. either. 

[00:28:14] Cheryl:
For me, I’ve always been interested in the personal stories, like the psychology behind everything. And so, then you realize, if your goal in life is to help people and some of their barriers are through the laws and the regulations like around things like insurance companies, then you do have to step up to formal advocacy to help yourself and help others. But yeah, at first I found it very intimidating and what this is — sorry, going to my story now, but one of the things was that I didn’t want to, quote unquote, ‘offend’ anyone. And I know that’s like a — now people are see that standpoint as being very problematic. And I think it was. And now, it’s you getting liked or not liked is not as important as using your platform and sharing your voice, you know. But it’s an evolution for all of us. And I do want to get to some of this invisible illness areas. It dovetails really nicely, because when you have an invisible illness, you do have to do a lot of this informal advocacy on a daily basis, like to explain to people why you don’t look sick but you are sick, right? So, can you talk a little bit more about what inspired you to do your invisible illness projects? 

[00:29:27] Effie:
Yeah, as we know, rheumatoid arthritis is an invisible illness. Many of us don’t show symptoms. I was like the epitome of a person with an invisible illness for several years. No one could ever really know I had an illness because I, quote unquote, ‘looked healthy’, looked good. For many years, I didn’t really tell people my illness at all, except for close family members and close friends. I didn’t really want anyone knowing. I know that I worked at the Arthritis Foundation when I was in college, but that’s about it. No one of my college friends outside of you knew either. So, it was something I wanted to keep a secret, because I wasn’t ready to really share.

And I guess it just comes with the accepting part too. Once you accept yourself and everything that’s going on, you start sharing things when you go through things, you start wanting to elaborate more and connect with others. And that’s what led to my Invisible Film project. Because in 2009 or 2008, when I was commuting to school, like I told you, I wasn’t living at the dorms, I took the train. Here in Chicago, we have something called the Metro train. So, I was waiting to go onto the platform and it was a really, really early day. It was like 7AM. So, it was morning rush hour. I parked my car in front of the train station and I popped out with and slung my backpack over my shoulder and then there’s three little steps that you have to go on to get to the platform. And I did that and whoever saw me probably was like, she’s faking it. She doesn’t have a disability. She’s not ill. Whatever. And they called the cops. It wasn’t a confrontation per se, but I made the film to be that way because eventually I, as I got into advocacy a decade later or whatever, I — or several years later — I started connecting with others and they had similar stories to mine, but some of these people were actually harassed, met in person with the other, and they were fighting or they had like really nasty messages left on their window shield of their car. I felt called to share this story because my situation happened when I was in college like 10 years ago. And I felt really shocked that it was happening now, or even worse. That’s what called me to create that. 

[00:31:39] Cheryl:
And I’ve seen stories and I think now because maybe it’s because cell phone cameras and videos are so much better that people are, they’ll take a picture of someone who’s walking away from their car. And they have a disability plaque and they’ll say that they’re not in a wheelchair, they must be faking. And they’ll like plaster that everywhere on social media and write terrible notes. Yeah. It’s really problematic. And it sounded like you were able to, at the WeGoHealth conference, get different advocates to share things that they wished people knew about invisible illness, which is so powerful. 

[00:32:12] Effie:
They’re not only rheumatoid arthritis patients, they’re people who’ve survived cancer, multiple sclerosis and other situations. And yeah, if anyone is listening to this and they want to get involved in advocacy or get involved in these type of communities, just reach out on Facebook, join a group, even sign up for alerts to get your local newsletter for when your legislators are free to talk to and all that stuff. So, everything can be online. You don’t have to meet with anyone in person. 

[00:32:41] Cheryl:
For better, for worse, the current pandemic has made that even easier in many ways. But yeah, I think something that I realized is that you don’t have to be the expert. You don’t have to do all the research on each issue that you’re advocating for the foundations like the Arthritis Foundation and the American College of Rheumatology. They already, they have like staff members that watch this stuff and they give you your bullet points and talking points. So, it, yeah, you don’t have to do it alone is definitely a major point. And what are some things in general for people with arthritis, everyone from occupational physical therapists, to rheumatologists, to primary care, and alternate naturopaths, anyone you’re paying for them to provide healthcare to you. What are some things you wish that they knew or did better?

[00:33:28] Effie:
I feel some can be more better listeners and a little bit more compassionate. I know not every doctor is like that. Some are more cut and dry and they just give you the prescription and they just expect you to take the medication, but not everyone is seasoned like that. Like I had said, not everyone also loves tough love from strangers. We’re all different with how the disease impacts us, but also our personalities are different. How we’re made up, mentally and emotionally, not everyone can be like, “Oh, yes, I’m going to take the medicine. I’m going to beat this.” Some people really get impacted by a diagnosis and they feel like their whole life is over and they give up. So, I feel like talking to a patient as a patient and not just like another number or a list on your, you know, who you’re seeing that day is important. 

Like, when I went to Mayo clinic, when I had seen one of the head doctors, they scared me a little bit. And so, I feel like that maybe was also a catalyst for me as to not wanting to take a certain medication, like methotrexate, for instance. I know so many people out there do not want to take that because of the side effect in how it’s marketed or what people say about it, but that’s one of the medicines that’s helped me the most, that I’ve ever seen. So, just, I feel like explaining things as well is helpful, you know, we’re not, a lot of patients are not medical professionals, neither are their families. So, it’s really important to talk to them and explain, “Hey, this is why you need to take this medication, this is why your cytokines are impacting your body,” or whatever else that we may not understand. Talk to us so we can get it, and then we can take action because not a lot of people know why they’re given these medications and why they can help you live a better life. They’re just told what they can do negatively to you and that’s not always the case.

[00:35:19] Cheryl:
It’s such a complex emotional and psychological experience to start a drug for most people, I found. I was the weird one who was like, I think I was just so used to being medically gaslit that I was like, “Oh, suddenly now you believe me.” Like, I’m going to seize this moment and do whatever you want me to do because you believe me now, and it was — anyway, there’s a whole psychology to that. But most people now, and there wasn’t, the Internet wasn’t the same thing back in 2000. 

[00:35:45] Effie:
That’s another podcast show. 

[00:35:46] Cheryl:
Yeah, that is, totally. Totally. Having a doctor that you feel comfortable opening up to and being vulnerable with about like maybe your own mistakes or your own fears. Like, I remember, so I’ve had this for 17 years. Like, I teach classes to people on how to manage it, but I’m not perfect. And I’m the first to admit that. And I remember telling my doctor, I’m like, “I’m sorry. Can you just remind me what this acronym stands for? My blood work is, I just totally can’t remember and I forgot why it’s important.” It’s like I have to be able to feel comfortable with her to be like, “I don’t want you to think I’m stupid, but I’m just gonna be honest.” And she’s like, “No, my gosh. Yeah, this is like my job full time. But like you’re, you’re not reading blood work every day, you know,” So, yeah, having that comfort is super, super important. 

[00:36:19] Effie:
I just wanted to add on, as a freelance writer, sometimes I’m assigned topics on these types of serious things and I’m not an expert either. So, I sometimes even if I wrote an article about sed-rate or CRP that was assigned to me and I researched and it was medically reviewed by a doctor, I still find myself asking, you know, those questions. And I feel like you need someone to explain that to you who knows and studies, that the Internet sometimes doesn’t always tell the truth. And it’s just because someone had a bad experience, it doesn’t mean you will eithe. 

[00:36:57] Cheryl:
Totally. Oh, that is a whole other episode. Yeah, one of the things I’m passionate about explaining to patients is something in statistics called representativeness, which is like how much does someone else’s result represent what you may or may not get. Because if you just go on a Facebook group and are like, “How’d you guys do on methotrxate,” it might be the people’s responses might not represent at all. They may be people who are, it might not represent what you might experience at all. There may be people who were diagnosed in 1984. Their joints didn’t have the same chance that you did if you were diagnosed in 2018. 

So, but people, if you don’t understand that history and that nuance. And also, the people who are doing well in methotrexate like me for the first five years, I wasn’t on any groups because I didn’t need to be because I was feeling good, you know? So, there’s this kind of silent majority sometimes who aren’t saying anything because they’re doing well. But one of the things that we all have to contend with as well is the general public’s misunderstandings about arthritis and rheumatoid arthritis in particular. Is there anything you would want the general public to know?

[00:37:59] Effie:
Yeah, so we always hear that you’re not too young to get arthritis, right? Yeah, and it’s not an old people disease. But as I was thinking about this question the other day, I don’t know if it’s because I was looking at my supplements and my medication for whatever reason beforehand, but it was just how arthritis is so expensive. I don’t know if the society really understands that. You know, disability is like number one here in the United States, I think I read. And it impacts so many, and I just was thinking about how much I paid for supplements, how much doctor’s appointments cost when they don’t have insurance coverage to cover those appointments, right? And then, our medications. If you don’t have a co-pay or financial assistance, you’re paying thousands of dollars a month. And who knows, even the whole amount, which could be up to $30,000. Who knows, $80,000? I don’t know the numbers, but it’s around there. 

[00:38:50] Cheryl:
Yeah. Mine, my healthcare last year was $70,000 was charged, like, for my healthcare. Like, I didn’t pay $70,000, that’s what it costs. And that was like a very, that was just to insurance and not to include the over the counter things of a daily life, aids that I’ve bought in order to help me function. So, I think that’s such a brilliant point. One of my passions is like saying it’s not just joint pain. It’s not just joint pain, you know. It affects every part of your life and including finances. It could be a down payment, like you said, you know in an email to me. Yeah, such a good point. 

[00:39:27] Effie:
Yeah, the down payment. Yeah, and I’m on disability. So, with that, I had to send in proof of how much I was paying and I’ve had totals, and I was like, yeah, it could be a down payment for a house or an apartment. It’s ridiculous. 

[00:39:40] Cheryl:
Is there anything else you wanted to share about and anything on topic or off topic about you, your story, or anything else?

[00:39:46] Effie:
If you’re newly diagnosed, do your research. Don’t be scared to get on treatment and connect with your community always. Cheryl’s a good resource. And if you ever need to talk to someone, I’m here too. 

[00:40:01] Cheryl:
Yeah. I mean, it really is a community and I feel like in the last year even, again, I’ve had this for 17 years, but you’re continuously making more connections. Like, I feel like I’ve made so many new, genuine friendships and connections with other patients and advocates. It’s really one of the things that can be a positive that can come out of this, not to force yourself to think positive, but just it is something that you can enjoy connecting with other patients and learning from each other. 

[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.   

Thank you so much for listening to another episode of the Arthritis Life podcast. This episode is brought to you by Rheum to THRIVE, an educational program I created from scratch to help you go from overwhelmed to confident, supported, and connected in a matter of weeks. You can go through the pre-recorded course on your own, or you can take the course along with a support group. Learn more at the link in my show notes, or you can always go to www.myarthritislife.net. That’s life.net. 

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