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Patient Stories, Podcast

How to Cope When your Diagnosis Changes: Episode 89 of the Arthritis Life Podcast

February 28, 2023
63 min read
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Summary:

In this episode, Clare shares how she coped when her diagnosis was changed from inflammatory arthritis to myofascial pain syndrome. 

Clare shares tips for how to cope with periods of no diagnosis or changing diagnosis. She also shares her unique perspective as someone diagnosed with autism as an adult, soon after her myofascial pain syndrome diagnosis.

Cheryl and Clare discuss the importance of perseverance in seeking help, building a personalized treatment plan, and ways to find joy in the midst of chronic illness while accepting that it’s okay to feel sad or angry too. 

The episode concludes with a discussion about how pain, brain fog, anxiety, and burnout are hard, but support is out there and can make a big difference in living well despite the challenges. 

Video

Episode at a glance:

  • Journey to diagnosis of myofascial pain syndrome and autism: getting referred to a variety of specialists to troubleshoot symptoms that mimic other conditions, learning to unmask and cope with pain, brain fog, anxiety, and burnout
  • Building a personalized treatment toolbox: currently incorporating pharmaceutical medication with integrative treatment. Physical therapy and exercise with gentle movement, yoga, and weight training, Cymbalta for depression and chronic pain
  • Finding joy: Find a community where you can learn new things and have compassionate and caring support. Don’t forget to find joy in the “little things”, like cozy blankets or a TV show / movie / book to escape to.
  • Advice for undiagnosed patients: You’re not crazy! The gray area is scary, but it won’t last forever. Keep an open mind, and know it’s okay to feel sad and angry. 
  • Coping with a change in diagnosis: Clare’s tips from her experience having her diagnosis changed: being open to new possibilities, advocating for yourself, and being realistic about what doctors know
  • Living well despite chronic illness: Getting to a place where you’re friends with your body – not fighting against it but rather acknowledging what your body has survived. 

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, an online course & support group program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here! 

Speaker Bios:

Clare Knutson 

Clare is a writer, runner, and future physical therapist. She loves spending time outside and working with animals. Three years ago, she began experiencing chronic pain and other mysterious symptoms with no apparent cause. After several years of seeking answers she finally received the correct diagnoses this year after several incorrect attempts at diagnosis. She is passionate about educating and encouraging others living with chronic illness and chronic pain. 

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 Episode Transcript:

Interview between Speaker 1 (Cheryl) and Speaker 2 (Clare)

Cheryl:  

I’m so happy to have Clare to share her story on The Arthritis Life podcast today. Welcome, Clare!

Clare:  

Hi. I’m so excited to be here. 

Cheryl:  

Oh, I’m happy to have you. And can you just give the audience like a quick intro to yourself? Like, where do you live? And what is your relationship to arthritis or chronic illness?

Clare:  

So, I am a California girl, born and raised. I’ve lived in California my entire life. And I am currently living in a sleepy little beach town just a few hours north of Los Angeles. It’s where I grew up and I absolutely love it here. I moved home unexpectedly during the pandemic when I was experiencing very mysterious health issues. And spoiler alert, I don’t have arthritis. However, the arthritis community is really near and dear to my heart because for many, many months, I was being prepared for an inflammatory arthritis diagnosis. And so, the arthritis community was the first place where I, you know, found other people to talk to who I had shared experiences with. And, you know, where I first got resources that helped me. So, like, even though I, you know, now, I am living with myofascial pain syndrome and something called autistic burnout, but I think that the arthritis community is probably going to be near and dear to my heart for the rest of my life, simply because that was the first place where I found community.

Cheryl:  

Wow, that’s so, so powerful. And it’s really true that, you know, there’s an overlap, a significant overlap, between these specific conditions that have arthritis, either in the name or as a symptom of the overall, you know, autoimmune or inflammatory condition. And then, there’s that, you know, just general pain conditions, you know, and we are really united. A lot of the things that are difficult about living with arthritis are the things that are difficult about living with pain, in general. I’m laughing, because I’m like, this is really obvious, you know. But it’s also like, it’s like this double-edged sword when we get — when we have disease-specific communities. It is so powerful, but also, we can miss out on the possibility that like, if you’re like, “I only belong in the arthritis community,” you might miss out that, actually, I belong not only in the arthritis community, I belong in the overall chronic illness community, or I also belong in the chronic pain community. You know, so sorry, that’s just a little —

Clare:  

Yeah, exactly. I mean, for me, it’s like this is, like I said, this is a space that is very near and dear to my heart. And I think it always will be, especially because I’m studying to be a physical therapist. And so, I know for a fact that I will someday have patients who live with rheumatic disease. And I really, really hope that my experiences and the time I’ve spent in this space will help me to be a better therapist to them.

Cheryl:  

I’m a hundred percent sure it will. And you might be surprised how many different conditions it helps with, you know, even like I used to work with, you know, children with developmental differences, and talking to their families just about some of the burnout they experience and stress from just navigating the healthcare system. There’s a lot of similarities with navigating the healthcare system as somebody with a developmental disability versus somebody with a chronic illness. There’s just some of those same barriers and that feeling of a power struggle, you know, like these people who have the power to help me, I’m not able to get to them through structural barriers, you know. So, but yeah, like, I don’t want to skip over your diagnosis story as you alluded to or mentioned, you know. You had a lot of mysterious health issues going on. Can you tell us a little bit more details, what were they, and what kinds of providers did you seek help from?

Clare:  

So, I have a very long and convoluted diagnosis story. And as I tell this story, one thing that I really want to emphasize is that when all this was going on, I was like 20 and 21 years old. I was like, learning how to live as an independent adult. I like, didn’t really have even like, a primary care provider or anything like that. My entire experience of receiving medical care had mostly been like, “Oh, my parents will take me to the doctor and I’ll go into the office by myself, and the doctor will tell me what to do.” And, you know, that’ll fix the problem. I’d never really had any serious health issues before that doctors had not been able to fix. So, but what really started me down this path with chronic illness was in the summer of 2019. I went on a horse packing trip in Wyoming for three weeks. So, I was out in the mountains. I was in the saddle for up to eight hours a day. I was lifting 75-pound packs on and off pack horses. I was breaking camp, and setting up camp, and sleeping on the ground. And while I was out there, I also got a head cold. Which is, you can imagine, it’s miserable to have a cold when you’re at home. But when you’re out in the middle of the wilderness, like hundreds of miles away from anywhere else, and you’re like expected to be on a horse all day long, it’s a pretty miserable experience. 

So, I had worked with horses for eight years prior to this. I had raised service dogs, I was a backpacker, and a hiker. So, I was used to hard work. I was used to what it was like to be out in the back country. I was used to pushing through when things got tough. So, I kind of expected that, you know, the aches and pains I was experiencing and the fatigue that I was experiencing, would go away once I got home. It never did. I went back to school, and I was a full-time student. And I was so fatigued. I was dragging myself to class every day. I was so tired; I felt like I couldn’t get out of bed. I was having pain in my right shoulder and down my right arm. I just didn’t know what was going on. And when I went home for Christmas break, my parents were obviously very concerned and pushed me to go to a doctor. So, I’ve seen like one primary care physician before. So, I went to go see her again. And she was also obviously very concerned that I was presenting with, you know, this really severe fatigue and inexplicable chronic pain and brain fog, and all of these symptoms that are not typical of someone in their early 20’s, who was at one point an athlete.

Cheryl:  

Right. And so, you didn’t — so, just to be clear, before the backpacking experiences in 2019, you hadn’t had any history of any health, like you mentioned earlier, you hadn’t had many health issues, right? 

Clare:  

Yeah. I mean, I’d had normal childhood illness. 

Cheryl:

Yes, yeah.

Clare:

I had some issues with my mental health. Nothing really with my physical health. Like, the most serious thing that had happened in the years prior had was that I had been diagnosed with asthma, that by that point was well-controlled. Everything else, up until this point, there’d never been any really serious thing that had made people think, you know, there might be something more going on with her. But when I first went to this primary care doctor, she was obviously extremely concerned and sent me for a bunch of blood work, because she wanted to know what was going on. All the blood work came back normal. So, she switched me to a different antidepressant and told me to exercise more. Now, during this time, I went home for spring break, and never returned to school, because a worldwide pandemic broke out. So, during this time, switching to a different antidepressant helped a little bit. It did help some with the fatigue. But it wasn’t a cure all. I was still experiencing intense chronic pain, and I was starting to experience it in other parts of my body. And I knew that I needed to get more help. But I couldn’t. Like, I suspected that I probably needed to see an orthopedist. But the only thing they would offer me was a video visit. And I was like, well, this is completely pointless. I need a doctor to physically examine me.

Cheryl:  

Yeah, I can’t imagine having those kinds of symptoms during the pandemic. I mean, I just, my heart goes out to you because that’s, yeah, that’s really, really rough to know that you can’t even come in to get a physical exam. I’m so sorry.

Clare:  

Yeah, and I mean, it was a wild experience. The first provider I saw, who actually looked at me was my current physical therapist, who my dad had been a patient of hers, and he — “Take my appointment with her and see if she can help you.” She was the first provider I saw in person and she was like, yeah, you need to go to an orthopedist. There’s something going on with your shoulder. At this point, we didn’t really suspect anything systemic, because the fatigue had gotten somewhat better. And so, we were really just focused on my pain. So, she was able to — here’s an interesting thing that now looking back was a really obvious clue that I had myofascial pain syndrome. This PT that I went to go see was an expert in myofascial work. She did some myofascial work on me. And immediately afterwards, I was able to stand up straight for the first time in several months, and my pain was significantly decreased. However, myofascial pain syndrome wasn’t even on the horizon as an option at that point. It was like, “Go to an orthopedist you probably have like biceps tendonitis or something like that. And they’ll be able to help you with a little bit of PT.” So, I finally was able to go to an orthopedist. And it was an incredibly traumatic experience. This guy was incredibly rude to me. There was a med student in the room who he was also incredibly rude to. I left his office in more pain than I came in with, because he was so rough when he examined me.

Cheryl:  

Oh, no, I’m so sorry. That is horrible. I mean, I don’t know. Yeah. To feel worse than when you walked in the room, that’s really significant.

Clare:  

Yeah. And it was, it was a very scary experience for me, because I’ve been to doctors that were like, kind of like, meh. They were okay. They didn’t really take me seriously. But like, I’ve never had a doctor actually hurt me before. So, that was a terrifying experience. I ended up not going back to that orthopedist. He was like, “Okay, I’m gonna send you for an MRI and then come back.” I ended up taking my imaging and going to a different orthopedist who was better. And he looked at the MRI and he said, “There’s nothing really wrong with you.” And after examining me, he said, “Oh, you probably have biceps tendinitis, like your PT thinks.” So, he gave me a shot of cortisone in my shoulder, and sent me to PT and assured me I would be good as new in six weeks. I ended up seeing two different physical therapists every week, for nine months. As we got worse, and worse, and worse, and worse. It was no longer just my shoulder and my arm, I started having neck pain, and back pain, and hip pain, and foot pain, and ankle pain. And it was an incredibly scary time. Because no matter what I did, things kept getting worse. 

And I kept going back to my orthopedist and being like, “This isn’t working. What’s going on?” And he kept saying, “Hmm, interesting. Well, we’ll send you back to PT, because that’s the only thing that kind of seems to help. So, we’ll just keep sending you to PT. And then, I’m also going to send you to a bunch of other specialists.” So, like I, I’ve lost count of the number of X-rays I’ve had now. I went to see an ankle specialist who was great. He was really, really nice to me. I also went to see an electrodiagnostician, which I didn’t even know that that kind of doctor existed. And he did a bunch of tests on me to check if my nerves were functioning correctly. I ended up in orthopedic urgent care after. Yeah, because I sat down on the floor one day, and when I stood up, my legs started going numb. They had no idea what was going on with me. But they said, “Okay, we’re going to prescribe you some Celebrex. And take it for a month, and see if it helps.” Now, here’s the really interesting thing. When I started taking Celebrex, most of my symptoms went away. I felt the best that I’d felt in a year. 

Cheryl:

Whoa.

Clare:

Yeah, it was wild. So, the next —

Cheryl:  

So, it is — okay, I’m just looking at Celebrex because I always forget. So, is it an anti-inflammatory?

Clare:  

Well, it’s a prescription strength anti-inflammatory that is specifically created to treat pain and inflammation from conditions like rheumatoid arthritis. 

Cheryl:

That’s what I thought. Okay.

Clare:

Ankylosing spondylitis, or psoriatic arthritis. At the time, I didn’t know this. But I was going to learn this very, very quickly because I had been going to different specialists and shunted to this, from this office to this office, and everybody was like, “We don’t know what’s wrong with you. It’s interesting that you’re in pain though.”

Cheryl:  

I mean, it is. It’s so hard because pain — I really tend to think of pain science is still in its infancy. Like, unfortunately, pain is not a really a big part of most doctors training. Like, there are pain medicine clinics, but the, your average doctor — and I don’t want to be one of those people who’s like, “Doctors don’t know,” because I’m like, the biggest proponent of like going to the doctor and trying to, you know, seeking expert help from actually legitimate licensed professionals. But it’s just true that a lot of providers aren’t really equipped to diagnose pain syndromes, especially when they don’t present in like a typical way. So, yeah. Well, I’m sorry.

Clare:  

Again, I’m like you, I am the biggest proponent of going to the doctor, and having a good relationship with your provider, and getting evidence-based medical care. But at the same time, I also have to tell people, you have to be realistic about what these doctors know. 

Cheryl:

Yes, yes.

Clare: 

Right? They might not always have the answers. And this is one thing that I really wish is that my orthopedist had admitted that he didn’t know what was going on with me. Because after I hurt my back, again, I went to go see him. And at this point, he had like, started losing patience with me, because I was too complicated. And he couldn’t figure out what was going on with me. And at one appointment, I had dared to suggest that I might have something called Thoracic Outlet Syndrome. Because the PT that he sent me too, suggested that I bring it up with him. He got really mad at me that I dared suggest any kind of diagnosis. And at that point, our relationship really started falling apart. So, at this follow up appointment, after I hurt my back, he kind of looked at me and looked at my symptoms and examined me and then very casually said, “I don’t want to freak you out. But I think you have multiple sclerosis. And you need to go to a neurologist.” As you can imagine, that really freaked me out.

Cheryl:  

Yeah. Yeah.

Clare:  

And so, I, you know, I was like, okay, let’s make an appointment with the neurologist. Of course, it takes a long time to get an appointment with a neurologist, so I had to wait four or five months. And during that time, I figured, okay, if I might have MS, I should learn as much as I can about this condition. Because if it’s something I’m gonna have to live with, I might as well know what I’m dealing with. And so, I started researching MS. And the more I looked at the symptoms and the progression of the disease, I thought, this doesn’t fit. I don’t know what I have, but I don’t think it’s MS. And the thing — and the thing that really clinched it for me was, I started looking at the different medications that are used to treat MS. And I specifically look to see if Celebrex is used in the treatment of MS. And in fact, I came across research papers that said Celebrex is not effective in treating MS. And that was the lightbulb moment, and my brain went, “Okay. This can’t be MS. Because this, you know, this prescription anti-inflammatory, is taking away most of my symptoms. Something’s not adding up here.” 

Cheryl:  

That’s really bright of you because a lot — and a lot of people who get preliminary diagnosis in rheumatology, they’ll say, “It’s really weird. My doctor says they want me to try this medicine. And if it works, that’ll give them a clue as to what my diagnosis is.” And I’m like, no, that’s really, really common actually. Like, especially like, prednisone. If prednisone works, that’s like a good sign that it is an inflammatory condition versus something else. So, yeah, so you were already doing like the doctor’s job to some degree, you know.

Clare:  

Yeah, because no other doctors were doing their job. And I’m the person — I’m like, no, don’t Google stuff. You’re just like — I was the person who was like, no, I have health anxiety. I’m not googling my symptoms. But it got to the point where I was like, well, someone has to do something.

Cheryl:

Exactly.

Clare:

And the only thing I have is Google. So, I bought myself to read research papers. I was a literature major in college, I was not a science person at this point. So, I taught myself to read research papers, because it was the only way I was figuring out information. And finally, one of my PT’s suggested that I needed to look into autoimmune conditions after all my nerve tests came back normal. So, I went to Google and I typed in ‘joint pain, autoimmune disorder’. And the first thing that came up was rheumatoid arthritis. I started reading through all the symptoms. And it was like, something kept clicking in my brain and I was like, chronic fatigue. I have that. Joint pain, I have that. Swelling, I have that sometimes. I was just reading through all these symptoms, and I’m like, this all sounds terribly familiar. So, I went and I looked to see what kind of specialist treats rheumatoid arthritis. I saw, okay, I don’t think I need a neurologist. I think I need a rheumatologist. asked. So, I took a risk. 

At this point, I had been dismissed by so many doctors and I was so done with the medical system. But I said, okay, we’ll try one last time. I’m going to make an appointment with a new primary care physician because I hadn’t had a primary care physician in two and a half years at this point because of the pandemic, because I moved home unexpectedly. So, I made an appointment with this new primary care physician. And I was so nervous going into her office, because I knew I was going to have to say, “Listen, I’ve been doing some research, and this is what I think I need.” And I was expecting her to get mad at me like that orthopedist had. But instead, she took me seriously. She looked at my symptoms, and she examined me. And then, she looked at me. She was wearing a mask and glasses, and she looked at me over her mask and over her glasses with the most disgusted expression in her eyes and said, “Why did this orthopedist send you to a neurologist? You obviously need a rheumatologist.” 

Cheryl:

Yeah.

Clare:

Yeah. Lo and behold, the clinic where my new primary provider had just — they’d just hired a new rheumatologist. 

Cheryl:

Oh, good timing. 

Clare:

And she said, “Oh, our new rheumatologist is lovely. I’m going to do some blood work, but I’m also just going to send you a referral to the rheumatologist so you can get in to see her.” And so, by September of 2021, I was in the rheumatologist office. And again, I was so nervous to go see her, because I had no idea what a rheumatologist did. I had never heard of a rheumatologist before. So, I had no idea.

Cheryl:

Most people haven’t. 

Clare:

Yeah. I mean, like, I had no idea. And again, she was so great. She took me seriously. She listened to me. And she said, “No, you’re on the right track. I’m gonna send you for bloodwork and some more imaging. But you were right to come in and your concerns are valid. Like, it really does look like maybe you have an autoimmune disorder.” And so, of course, she did bloodwork and we did some MRI’s, and it all came back normal. Now, if you’ve spent any time in the world of rheumatology, and you’re listening to this, you will know that that doesn’t really mean anything in the world of rheumatology. You can have bloodwork and normal imaging and still have something going on. So, but I remember my rheumatologist sat me down to explain what was going on. She said, “You know, you’re so young, that you probably haven’t been sick enough for something to show up yet. And we’re just going to have to wait.” And she told me a couple stories about other patients she’d had just like me who had mysterious symptoms, and had finally gotten a diagnosis. And then, she said something that I’m so glad she said this, because I’m not sure what I would have done if she hadn’t said it. But she said, “I haven’t forgotten about you. We just need to wait a little bit longer.” 

Cheryl:  

Oh, my gosh. That’s like giving me chills. I’m sorry. Because like, I had, I was 20 when I first started having symptoms, or 19, 20. And I got diagnosed when I was 21. But I felt like so forgotten and delegitimized and that, and those words, if I had heard those, would have changed my mental health so drastically that I would have felt so much better if someone had just said, “We believe you that there’s something going on here. We just don’t know what it is,” like, it’s okay to say you don’t know. But just knowing that they at least care about you, is such — I mean, how did how did you feel when you heard that? Sorry.

Clare:  

I just about started crying from relief in the office. Because I had, I felt so ignored and so delegitimized, even from the specialists who had been really kind to me. They were just kind of like, “Yeah, this is interesting, but we don’t know what’s going on. See you later.” Whereas my rheumatologist was like, “Listen, I suspect that this might be early onset inflammatory arthritis, maybe it’s psoriatic arthritis. Maybe it’s ankylosing spondylitis, maybe it’s rheumatoid arthritis. Maybe it’s, you know, Sjogren’s, or lupus. We can’t tell right now. But there’s something going on. And we’re going to wait and see.” And just having her promise that she hadn’t forgotten about me was so gratifying. And that made me feel so much better, because I had felt like doctors were just kind of pushing me aside because they didn’t know. And so, basically, what she told me is, “Listen, you’re doing everything right right now. I’m going to give you a prescription for Celebrex. Take that twice a day, keep exercising, keep going to PT. And just wait. We’re going to figure this out.” And so, once again, I figured, okay, if I have some kind of inflammatory arthritis, I should learn about this. I should figure it out as much as I possibly can now. 

So, I started following people online who had inflammatory arthritis conditions. I started reading their stories. I started, you know, looking at like, The Arthritis Foundation, and Creaky Joints, and all of those amazing resources that are out there. I learned so much. And I genuinely did start to get better. I was still very, very sick. But I started improving. Suddenly, I had tools to help me every single day. But the thing was, even though I was getting better, I didn’t, I didn’t have things under control. I really tried to hold on, because my rheumatologist, she specifically said she wasn’t forgetting about me because she was about to go on maternity leave. And so, she didn’t want to worry me. She didn’t want me to worry while she was gone that she was just gonna forget about me. And so, she said, “Yeah, I’m going to make an appointment for you now so that you can see me in March, so you’re not worried that I’m going to forget about you.” I really tried to hold on until that appointment in March. But by about November of 2021, I’ve started to enter the one of the worst flares I’ve ever been in. And it was, it was a really difficult time. Most of my flares had only lasted a week or two. This one lasted months, and months, and months. And by the end of January of this year, I finally had to throw in the towel and say, “I need more support.” I can’t make it until you know, early April when my next appointment is. 

And so, I made an appointment with the rheumatologist who was covering for my primary rheumatologist. And she saw me in February, and she looked at me, and she looked at all of my history. She was very interested by my case, because I was so young, and nobody could figure out what was going on. And she examined me, and she looked at me. And she said, “You know, this is really interesting. You have a lot of the symptoms of inflammatory arthritis, but you don’t present typically. You’re at — when I palpate your body, you’re actually presenting with myofascial pain. I think you have myofascial pain syndrome.” And so, here’s a note that I forgot to add. By this point, I had switched careers from — I was going to be an English teacher. And I switched careers to be a physical therapist so I could specialize in myofascial work. And so — 

Cheryl:

World’s colliding. 

Clare:

So, I had known myofascial pain syndrome existed, but I was like, no, it can’t be that obvious. I’m totally biased towards that diagnosis. I can’t — it can’t be that obvious. So, I knew about it, but I kind of just wrote it off because I was like, yeah, yeah. No, there’s no way it could be that simple. And so, you know, the rheumatologist was like, “You’ve probably never heard about this.” And I said, “Actually, no. I know a lot about myofascial pain. I’m planning to be a PT who specializes in myofascial work.” And so, I asked my PT who was my PT and had also become my mentor, and she said, “Yeah, I would 100% agree with that diagnosis. You are a textbook case of myofascial pain syndrome.” And so — 

Cheryl:  

Wait. So, sorry, can we pause for one second for people who don’t know what fascia or myofascia is? What — how do you describe it?

Clare:  

So, the fascia is connective tissue in your body. It kind of looks like saran wrap around the muscle. And for a long time, we thought it was just passive connective tissue that holds things together. It’s actually a very active and dynamic system in our body. It helps keep our muscles sliding and gliding properly. However, the thing about the fascia is that I like to think of it — so, you’ve probably heard about the gut being referred to as the second brain. I like to think of the fascia as the body’s third brain. And it’s a very emotional brain, and it’s kind of high maintenance. Sometimes, the fascia can get hyper-irritated after all different kinds of trauma; viral illness, physical injury, emotional trauma. Often, people end up with myofascial pain after like car accidents are something like that.

Cheryl:  

I was gonna say, I did. In 2016, 2017, I had a car accident. And yeah, I really had some myofascial — and I actually did also have diagnosed Thoracic Outlet Syndrome too, by the way. So, but yeah, that’s really, yeah, it is something you can literally, like, not to get too graphic but like, on a cadaver, you know, or on an actual human tissue, you can see the fascia. Like, it’s an actual, it’s not like microscopic, where you will see it with the naked eye.

Clare:  

Yes, no, it’s like, again, this is kind of gross, but like, when you’re in PT school, and you dissect a cadaver, you literally have to peel the fascia away from the muscle. It is very much an active part of your body. But anyway, when you have something like myofascial pain syndrome, you develop something called trigger points. And these are spots of hyper irritation in the muscle. Basically, the fascia gets kind of bunched up into these hard knots. My PT likes to refer to it as a snag in the sweater of your fascia. And it’s kind of like this tangled up ball. And it’s very, very hard and tender, and it creates referred pain. And this is really important in my story, because I have a trigger point that exactly follows at the path that nerve pain would take if I had cubital tunnel syndrome, which is basically where your ulnar nerve, which is a nerve in your elbow, if it was to become entrapped. My myofascial pain follows the exact same path down my arm. So, this is why for months and months and months, people thought I had nerve pain, because I had pain that was originating in that spot and then travelling down my body. And this is —

Cheryl:

Oh, it’s fascinating. 

Clare:

Yeah, it’s wild. And it’s really interesting because myofascial pain mimics a whole bunch of different disorders. It mimics early onset rheumatoid arthritis. It mimics multiple sclerosis. It mimics lupus. It is like this great imitator.

Cheryl:  

Is myofascial pain worse after inactivity, or better after, out of curiosity.

Clare:  

It is mostly worse after inactivity.

Cheryl:  

Oh, that is very similar to rheumatoid arthritis. I was gonna say, that’s sometimes the differentiating factor, because people with rheumatoid tend to really present with that pattern of morning stiffness, you know, getting better with activity. But if myofascial pain is also worse…

Clare:  

I mean, yeah, and sometimes it will flare up if you push yourself too hard with physical activity. But like, again, most often, it’s worst at night. And in the morning, like I wake up, you know, with joint stiffness and pain. And that’s why people thought I had early onset RA or something, because I had that stereotypical early morning stiffness. 

Cheryl:

And fatigue. Like, those are like the two —

Clare:

I’m like, I also I even had like, swelling. And so, like I had a joint aspiration and stuff like that. And it all came back normal. But here’s the thing about myofascial pain, it can mimic other kinds of pain. So, it can mimic nerve pain, because it causes numbness and tingling. It can also mimic joint pain. So, I have something that I like to call pseudo-joint pain, which is maybe not the best word because that kind of implies that it’s fake pain. But what I’m trying to imply with it is that it’s pain around my joints, but it feels like it’s coming from my joints. It’s actually because the fascia is irritated that it is binding down to the muscle and putting tension on the joints. But it feels like my joints should be swollen and hot and inflamed and tender to the touch. But they aren’t. 

Cheryl:  

But they aren’t. Because I was gonna say with rheumatoid, you sometimes, if it’s really bad, like if you have pale skin it will literally appear red light, or pink, and they can, the doctors, that’s why the physical exam and the visual exam can be important. And they’re like, you have this almost like choose your own adventure decision making tree of like ‘If this, then this’, like if you have these things that could be rheumatoid, but if it doesn’t have redness or isn’t worse with like palpation directly in that area — yeah, that’s so — I mean, I hope people listening maybe will be having some light bulb moments go off because maybe I feel like I’ve been encountering more people on social media lately and it may be just be that I’ve got more, you know, people in my orbit or something, but more people who are in that pre-diagnosis or that grey area of not quite diagnosed yet. And it’s such a difficult thing. So, sorry, I don’t mean to — you were you were explaining —

Clare:  

It’s a really difficult space to be in, though, because people are like, “What’s wrong with you?” And you’re like, how long do you have? How long? I mean, like, and I literally just, at one point, I just started telling people, I’m like, “I have rheumatoid arthritis,” or like, “I have early onset inflammatory arthritis,” because I was like, this isn’t technically correct. But people at least understand when I’m telling them this stuff. Whereas before, it’d be like, so your body hurts? Okay. Yeah, everybody’s body hurts at some point. But anyway, it was a very, like, weird path to diagnosis because it was like, “We don’t know. We don’t know. We don’t know. Oh, we think we know. Oh, wait, nevermind. Now we’re veering down this other rabbit hole.” So, sure enough, I had that first rheumatologist say that she thought it was myofascial pain syndrome. I had my PT say that she agreed with the diagnosis. Then my rheumatologist came back from maternity leave. I updated her on everything. And she said, “Yeah, I would absolutely agree with that.” And now, I thought this was gonna be the end of the story. I thought this was gonna be the end of my diagnosis story. I figured, okay, this is the end. 

Then, right around the time that I got this diagnosis, I started working with a therapist. And after a few months of working with her, we realized that I needed to go in for an autism evaluation. And that was when I learned about something called ‘autistic burnout’. I started reading and basically, autistic burnout is not like typical burnout. Autistic burnout is a result of needing to mask autistic traits and constantly having to put up with uncomfortable sensory experiences. And it’s an extremely stressful experience for the mind and body. And essentially, at some point, you just hit a wall. Like, you just hit a brick wall, and you can no longer function at the level that you were functioning. And it comes along with a myriad of mysterious symptoms. Unexplained chronic pain, fatigue, brain fog, anxiety, all of these different symptoms. And basically, it mimics a whole bunch of chronic illnesses. So, a lot of people who are not diagnosed as autistic will often go through all of these extensive medical tests, and never get any answers because doctors don’t know to look for autistic burnout. They don’t even think about it. And a lot of times, even if you are diagnosed as autistic, people don’t know that autistic burnout exists. So, when I went in for a formal autism evaluation, I asked the specialist who was evaluating me about it. And two weeks ago, when I got my official autism diagnosis, she confirmed my suspicions that I was in pretty severe autistic burnout and that was playing up and basically exacerbating all of the symptoms of my chronic illness.

Cheryl:  

Wow. I mean, first of all, thank you for being so open talking about this. It’s been so recent, because two weeks ago is a really not a long of time to process what has been going on. But does it, is it helpful to have that explanation to kind of — because it does feel like that final puzzle — not final. I never want to say final puzzle piece, but of puzzle piece to put together —?

Clare:  

It does. And it’s extremely helpful, especially because the psychologist sat down, she was over Zoom, she didn’t really sit down. She was like very — she didn’t say the exact words, but she was very clear that she was like, “You need to learn to manage your burnout, or your chronic illness will not get better. If you can’t — like, you have to learn to unmask, you have to learn to manage these sensory experiences. Because if you don’t, you’re not going to be able to make progress with your other health conditions.”

Cheryl:  

Mm-hmm. And can you describe for the people who — because I am pretty familiar with, you know, the sensory issues and the masking issues that can go along with being autistic, not from personal experience, but from my previous work. But can you describe a little bit like, what does masking mean with respect to autism, and also, what are some of, in your experience, some of the sensory, the aversive sensory things that you’ve had to cope with? 

Clare:  

So, masking refers to basically kind of playing a character, basically putting on different traits to hide your autistic traits. So, like, for example, I have a relatively flat affect. So, one thing that I will do is when I’m talking to people, I will aggressively raise my eyebrows in order to signal that I am paying attention to people. Because I generally like, my facial expressions generally don’t change that much. So, like, I learned, okay, neurotypical people raise their eyebrows in order to signal that they’re paying attention to people. And, but also, other things that people do is like, they will change their voice so that their voice sounds quote-unquote ‘more typical’ or they will suppress certain behaviors, called stims, which are basically self-regulating behaviors that kind of give autistic people the sensory input that they need to kind of calm their nervous system. And that, you know, not being able to do those things puts a lot of stress on the body. 

Like, so imagine going out in public and thinking about every single facial expression you make, and every single body movement, and constantly having to observe how other people are behaving like. That’s what it’s like going out in the world when you’re autistic. Because even though you learn social norms, they don’t come naturally to you. So, you have to constantly be thinking about things. And you have to basically not act as yourself, and it’s very, very exhausting. Then, on top of that, you’re living in a world that is not built for you. So, stuff like fluorescent lights are incredibly draining to most autistic people, because they are just so bright, the sound of traffic is overwhelming. A lot of the time, it’s described as the lights being too bright, and sounds being too loud, and smells being too strong, which is true. But actually, in my experience, the most exhausting part is not necessarily the intensity, but the fact that my brain does not process all of the sensory input correctly. 

So, for example, if I’m sitting in a lecture class, I know I’m supposed to be paying attention to the professor giving the lecture. However, my brain is also trying to give equal attention to the people having a conversation eight rows behind me, and the person sitting next to me typing on their laptop, and the person a row behind me, you know, fiddling with their papers, or whatever. And that’s the difficult thing. It’s not so much the intensity, but the fact that my brain is fighting to give equal attention to all of these things all the time. And trying to filter that out, is a lot of work.

Cheryl:  

I’m exhausted thinking about that. A hundred percent, you described it really beautifully. And I think one of the things I remember being a long time ago is that the process of like pruning, like sensory pruning of the nerves, is not done in to the same degree in — the theory, neurologically, is that the pruning process of like, getting rid of quote-unquote ‘unnecessary’ neural connections is not done to the same degree. So, you, potentially people who are autistic, have more connections neurological in their brain, which makes it means like, exactly as you described, that there’s a lot of inputs happening at once and they’re very difficult to filter. And I think another thing, just throwing it out there for anyone listening, is that a lot of times when people think about sensory differences, they think about hyper, being hypersensitive, like things seeming too loud, too hot, too close, but you can also be hyposensitive, and that can cause functional challenges too. You could not — you could require more input to get to an act of behavioral response, like you need people to say your name louder, or you need more physical input to understand where your body is in space. Maybe when it comes to proprioception, which is like your awareness of where your body is in space. So, it’s very much like, multifaceted because you have these social pressures from externally, right, of an entire world where it’s designed for neurotypical people who are excess — I mean, I consider myself one of those like, excessively social people, right. I’m like, in your face and I want to — I love small talk. And I also love talking to you, but I’m like, too much, too loud, too everything. And I’m like, yeah, I’m a lot for somebody who sometimes on this, on the spectrum, it’s like too much, tone it down, girlfriend. 

Clare:  

Like, yeah. I mean, like I would rather pull out my own fingernails than engage in small talk. That sounds like a more enjoyable experience to me. Or like, dental work without anesthesia.

Cheryl:

Oh, my gosh.

Clare:

I be like, please, don’t make me talk about the weather. But yeah, you’re right, that actually hyposensitivity is also part of it. Like, this plays into my experience of chronic pain. Because like, you know, yes, I notice when I’m in pain. But often, the signal doesn’t really reach my brain, and I don’t really process it until my pain is really, really, really high. Because other people will be far more tuned in to their pain. And they’ll be like, “Oh, my finger kind of hurts,” whereas I will be like, “I’m feeling something in my body. What am I feeling?” And so, that can be difficult in managing chronic pain. Because, you know, you’re supposed to start managing your pain when it’s at low levels. I’m not necessarily getting the signal to my brain, “Hey, you’re in pain, you need to do something about it now,” until it’s already at the point of like, how do we even manage this, this is through the roof. And so, that’s something that was also really difficult in getting a diagnosis. Because like, doctors kept asking me to describe the quality of my pain. And I was like, I don’t know. It hurts. You know, and I like, I’m a writer. I just like, I really struggle with actually describing the sensations in my body. Because so often, my brain is like, “I’m having a sensation, how do we respond to that sensation?” And there’s this disconnect of like, okay, I need to put these two signals together, and I can’t quite do it yet. It takes me extra time. 

And so, for me, it’s taken a long time to learn to read my body, because I don’t pick up on those signals as quickly as other people do. And also, the other thing is the stress of masking and the stress of being in the neurotypical world exacerbates all of these symptoms. Because anybody who lives with chronic pain or chronic illness, the first thing a doctor tells you is you need to learn to manage your stress, or you need to learn to eliminate stress. Okay, how do I eliminate the stress of fluorescent lights? Yeah, I can’t be like, “Guys, we need to remove all the fluorescent lights from my hometown and every single place I’m going to go, because they make my head hurt.” Like, that’s not going to happen. That’s unrealistic.

Cheryl:  

Right. Yeah, we always have like a two-prong approach for sensory sensitivities. There is this idea of a threshold, right, we have different thresholds, like I’ll give it a — taste is always a simple one to explain. Like, you know, my threshold for spice is very low. It takes a small amount of input to evoke a response. I’m like, oh, that feels like too much for like a little bit of pepper, right? So, but let’s say I’m living in a world where there is pepper everywhere. You either have to then say, “I’m going to have a workaround to avoid pepper, or I need to increase my threshold.” But there is there are these kind of points where you’re like, there is no more, there’s no higher I’m going to be able to go. Like, and so then I have to do the workarounds. Can I avoid it? Or can I give myself some psychological tools to cope in the face of this aversive stimulus? You know, I mean, you know, when you — maybe there are examples, I don’t know why this is such a weird one. But like, when people have a baby, and they might be really sensitive to smell, you have to get used to baby smells, and poop, and farts, and throw up, and everything really fast when you have a baby and maybe your threshold actually changes. I actually — you mentioned cadaver lab earlier. In occupational therapy school, I was extremely freaked out when we first went into the cadaver lab and I thought I was gonna throw up. And I was like, I can’t handle this. But because there’s only so much I could do, I did kind of slowly kind of get my threshold a little bit higher in terms of my ability to cope with, you know, these smells, and the psychological experience of being with, you know, cadavers that weren’t something that I kind of had prepared myself for. So, you know, there’s — but long story short, you know, that’s a lot to be coping with all the same time.

Clare:  

Yeah. So, there are, you know, there are things you can do. Like, for example, I’m learning to unmask. Like, one thing, like the aggressive raising of my eyebrows triggers two really stubborn trigger points at the back of my neck, which then causes me to have just mind bogglingly painful headaches and neck pain. But if I learned to unmask, and I don’t aggressively raise my eyebrows — which is a very difficult thing to unlearn to do when you’ve been doing it for like 20 years. It’s like, you know, like, I will do really, really well for a while. And then, I’m like, what happened to your eyebrows, girl? They’re up by your hairline. And so, it’s something that I’m, you know, unlearning. But the more I unmask, the higher my tolerance for stuff like fluorescent lights, or traffic noises, or stuff like that. It goes up, because the stress on my body is going down. And this is a really interesting thing that like, I think a lot of people, you know, they don’t think about the fact that you can live with multiple conditions. And those conditions can interact with each other and make things complicated.

Cheryl:  

Yes, yes. Sorry. I didn’t mean to — I’m aggressively agreeing with you now. But no, and I think changing habits is huge, especially when you’ve had positive reinforcement, or those habits, right. And the other classic one with autism is like, “Oh, look me in the eye, look me in, you know, look, so and so in the eye.” And there is even like a sensory explanation for that, at least in some of the first-person accounts I’ve read from autistic individuals saying, you know, it’s sensory overwhelm when I look someone in the eye. And like, and I thought that was, I don’t know, if that’s what you experienced, too. But I know, not everyone does. But yeah, okay, so you do too. And it’s like, there’s so much communicated through eye contact, you know. I can totally see why that would be, you know, overwhelming. And so, maybe knowing like, I remember when I went to — this is gonna sound random — when I went to northern India, and work briefly with a non-profit I was with, with some Tibetan children, we learned that in the Tibetan culture, it’s actually seen as very disrespectful to look someone in the eye. It’s more respectful to look away, you know. So, it’s very arbitrary. Some of these social norms, you know, why is it the norm in American culture to look someone in the eye? I don’t know. But you know, can we say, hey, you know, I don’t — just because it’s what I’m used to, is someone looking at me in the eye, if I’m talking to Clare, I’m going to know that that’s not comfortable for her. So, I don’t want you to look me in the eye, you know, that kind of thing. We all should be more open to accommodating each other, in other words.

Clare:  

Yeah, I mean, like, I learned how to fake eye contact at a very young age, because I hate eye contact. Like, for me, making eye contact with people, I’m okay with brief eye contact, but prolonged eye contact makes me… I can only describe it as like, I feel like a rabbit being hunted. I feel like I have to run away, because it is so utterly overwhelming for me. But neurotypical people really like making eye contact, at least in America. They like making eye contact. And if you don’t make eye contact while having a conversation with them, they don’t know how to function. So, like I learned how to fake eye contact at a very early age, or like, I always wear sunglasses when I’m talking to people outside, so that they don’t know that I’m not making eye contact with them.

Cheryl:  

That’s the benefit of being in California. Though, I wouldn’t work for more than a couple of months in Seattle. But no, thank you. I mean, I think the stress of living as a neurodiverse person in a neurotypical world is, I mean, cannot be under stated. And truth be told, you know, I used to work with like elementary aged children, it would just it would break my heart really seeing how, you know, imagine every single day constantly being told that who you are and how it makes sense for you to be in the world is wrong. You know, you need to do — sit still, you need to look in the eye, you need to do, you need to stop flapping, you need to do that, you know, and it’s like, you know — I’m sorry, I’m just going on my soapbox. But no wonder, you know, this stress and trauma in childhood is associated with the development of autoimmune diseases and chronic illnesses in general, just tons and tons and tons of work on that. And so, it’s no surprise that people who are, you know, autistic or neurodiverse are at a higher risk of developing chronic illnesses because they’ve had to submerge who they are for so long. I don’t want to speak for the population, but that’s just a phenomenon.

Clare:  

Yeah, I mean, that’s a really good way of putting it. And I mean, you know, the question I get, sometimes it’s like, “Okay, well, is this autistic burnout or is it myofascial pain syndrome?” And the answer is yes, it’s both. There’s no, like — I can’t didn’t know for sure. But like, I know that my burnout started far before the myofascial pain syndrome started. But I do wonder, maybe I would have been able to recover from the initial myofascial pain if I hadn’t been burned out. Maybe if I hadn’t had this stress on my body, I wouldn’t have the symptoms that I have now. And I have no way of knowing that. But, you know, it’s kind of this chicken-egg scenario of like, which came first? Well, they’re probably interconnected, and there’s really no way of separating them.

Cheryl:  

Yeah. And what are some of the ways currently that you are — I mean, I just wanted to make sure I cover it currently for your myofascial pain. What are some of the treatments that are working? Are you still doing physical therapy?

Clare:  

Yes, so I do physical therapy pretty much every week. I also go to acupuncture every single week. And I have a lot of stuff that I do at home. Like, so my approach to healthcare, I guess, could best be described as ‘integrative medicine’. I use both pharmaceutical and more quote-unquote ‘natural techniques’ to treat my myofascial pain syndrome. So, like, I don’t really take Celebrex every day anymore. That was, that worked for a while. And that was a really helpful tool to get my body out of crisis mode. And this is something that I kind of want to like highlight as something that I’ve used in the past, because I know some people who have inflammatory arthritis are scared of Celebrex, because it’s like an NSAID. And so, it has the same risks. I would encourage you, if your doctor recommends it, just to try it, it could be a really helpful tool in your toolbox. It is the reason why I’m no longer in crisis mode. It’s the reason why I’m recovering. And, you know, now I’ve moved on from using it every single day. And now, I actually rely on turmeric supplements instead of Celebrex to manage day to day pain. I also take an antidepressant called Cymbalta, which also helps kind of calm down my nervous system. I do a lot of physical activity at home, I really try to prioritize gentle movement every single day. I’m a runner, and I do some weight training, and I do yoga. And the thing that really helps me is getting out every single day and moving, as well as keeping on top of all the supplements that I take, and going to PT and doing the exercises that my PT recommends.

Cheryl:  

Those are not the same thing. And going to PT and actually doing the home exercises, yeah. 

Clare:  

Yeah, no, it’s not the same thing. And trust me, trust me, as a future physical therapist, let me just say, your PT is not giving you these exercises just to be mean to you. There’s actually a reason why they’re giving them to you and you can’t — you can modify them, and you can change them. And like, if you don’t have the spoons to do it every day, that’s okay. Try to do it regularly. And that’s the thing, you know, that really has worked for me is creating this routine where I take my medication regularly, I move regularly, I stay on top of my appointments, and I do my exercises. Those are the things that helped me. Because, you know, myofascial pain syndrome is one of those things that when it flares up, it gets really bad. Like there’s, you know, and you can feel it coming on for a few days, and you kind of — I will often have this period of like, okay, I feel myself going into a flare. If I you know, play my cards right right now. And I had like, you know, make sure that I walk more and I stretch more. And I like, do some myofascial release at home, I can maybe head off this flare. But if I ignore it, I am going to end up in a horrific flare and I’m going to have to do extra PT and extra acupuncture and take, you know, extra medication to try and manage these symptoms.

Cheryl:  

Oh, I know. It’s so much easier to prevent than it is to catch up once you’re already in that flare. So, yeah, learning to recognize those early warning signs and doing your strategies and tools there is just, is huge. And before we get to the rapid fire questions, I just wanted to make sure to give you a chance, is there any advice you would have or just words of encouragement for somebody who is in that really — what do we call it — the long and convoluted undiagnosed period? Is there anything else you would say to someone who’s currently experiencing that? The hard one.

Clare:  

I think the first thing I would say is, you’re not crazy. You’re not crazy. There is something going on with you. There’s something wrong. And I know that being in this gray area is a really, really scary place to be. But you’re not going to be there forever. And I would really encourage anybody who is in this muddy and messy space pre-diagnosis to, first off, trust your gut. Because you do know what is going on in your body. No, you’re not a doctor; you can’t give yourself a diagnosis. But you are the foremost expert on what is going on in your body. Secondly, I would encourage you to keep your mind open. Don’t get so locked on one diagnosis that you don’t, you know, you don’t see signs of what else it could be. You know, and just because your doctor thinks that you have one thing doesn’t mean you’re necessarily going to get that diagnosis. When I first got sick, if you told me that the diagnosis would be myofascial pain syndrome and autism, I would have been like, what are you talking about?

That saying, there’s no way it could be that there has to be something else going on. But the thing is, what you want at the end of the day is the right diagnosis. You don’t want a specific diagnosis, you want the right one for you. Maybe that’s psoriatic arthritis, and the thing that you need is a biologic. And that’s going to be the thing that helps you heal and helps you make progress. Maybe what you have is lupus, and you need some other treatment. Maybe you’re experiencing autistic or ADHD burnout, and you need strategies from neurodiversity-affirming care, that’s going to help you recover. But the point is, you need to stick it out. And trust me, have some faith and trust that you will find the right path for you. It might be completely different from what you expected. But once you find yourself on the right path, you will make progress that you, you know, you can’t even imagine that you’d be able to make right now. And also, it’s okay to be sad and scared in this phase. It’s totally okay, you don’t have to be fine all the time. In fact, I encourage you to not be fine. It’s okay to be angry. I also encourage you to find a space wherein you can talk with other people who have been there. Here’s my plug for Rheum to THRIVE, like, for even if you don’t join Rheum to THRIVE, find some space, find some community where you can learn new things and also have compassionate, caring people who’ve walked the same path to help you.

Cheryl:  

A hundred, a hundred percent. It’s, every single time we have a meeting, it just, it blows my mind how deeply many of us feel alone in our experiences. I’ve told my story of feeling medically gaslit so many times, and I still, it’s like, when I get those nods in the group, if I mention it, those nods from other people. Like, “Yeah, that was rough,” like that, “You shouldn’t have had to experience that,” you know, and just that validation, because we can be so hard on ourselves. Like, “I should have explained it better. I shouldn’t have believed them when they said I was just stressed. Like, I should have tried, worked harder to get myself a diagnosis earlier,” you know, just yeah, it’s like when you have this group of friends, you know, or chronic illness buddies who can affirm you. It’s beautiful. It’s a beautiful thing.

Clare:  

Yeah. I mean, my favorite, like my favorite part are Rheum to THRIVE meetings — I totally did not expect this — but like, my favorite part is seeing when someone is sharing their story and everybody else’s screen starts lighting up and the chat starts scrolling and everybody is sending heart emojis and stuff like that, that is my favorite part. That is, that is the best part of just like there’s just this quiet acknowledgement of like, we hear you, we see. And having that when you’re living in a really difficult time is so, so valuable.

Cheryl:  

Yeah, I’m so glad you joined because and there are people who joined Rheum to THRIVE who are in that same period of a kind of an undiagnosed, you know, or preliminary potential diagnosis of inflammatory arthritis. And, you know, it really is the majority of what we talked about in the group, in the support part. This is true for any chronic illness. It’s not just specific to rheumatic disease, but some of the education part is specific to rheumatic diseases. But, but okay, I’m gonna get to the some of the rapid fire —

Clare:

The rapid fire questions. 

Cheryl:

Yeah, yeah. We just talked about words of wisdom for people who have not gotten a diagnosis yet. Do you have any additional words of wisdom for people who just did get a diagnosis and are like, “Wait, okay, I wanted a diagnosis.” But then you’re like, “Ah, I’m also freaking out a little bit.”

Clare:  

Okay, I do. So, I’m gonna read a very, very short poem that I wrote about a year ago, when I had one of my biggest breakthroughs in managing my chronic illness, was the poem that I wrote: ‘Chronic illness is not a war you must constantly fight, never ceasing, even for a moment. You can lay down your weapons. Rest your hands gently upon your ailing body and say, enough is enough. Today, I am your friend. Tomorrow, I will also be your friend, and every day hereafter. Listen closely, and you will hear your ailing body whisper in a ragged, hopeful voice, no more than a breath, thank you.’

Cheryl:  

That’s amazing. Wait, I’m gonna give you a heart again. I already gave it one heart. That was — I am going to have going to relisten to this recording again, because that was beautiful. That was, it’s so easy to fall into that warrior mentality instead of the friend. Do you have a favorite joint pain gadget or tool in your toolbox, or myofascial pain tool? 

Clare:

I do.

Cheryl:

Okay, yeah.

Clare:  

So, the first one is the neck hammock, which is a device created by a PT that offers very gentle cervical traction. If you have chronic neck pain, this is the bomb. It is amazing. The one caveat I will say is that if you have like EDS or another hypermobility syndrome, do not use the neck hammock. Vertical traction is not good for you. But if you don’t have, you know, hypermobility syndrome, you’re good to go. And it could save you quite a bit of money because you don’t have to go to PT as often. But my second one is an electric blanket. I’m probably the only person in Southern California who regularly uses an electric blanket. They’re amazing.

Cheryl:  

Awesome. I love it. And then, do you have a favorite book, or movie, or show you’ve watched recently?

Clare:  

Yes, if you want a happy, little cozy escape from the complexity of the world and the complexity of living with chronic illness, go read ‘The House in the Cerulean Sea’. It is just this heartwarming book about family, and love, and magic, and home. And it is just one of the most heartwarming books I’ve ever read. And it is like my go to audiobook on a bad flare day.

Cheryl:  

Oh, my gosh, I am going to get that tonight. And then, do you have a favorite mantra or inspirational saying for difficult days?

Clare:  

So, one thing that I really like to do is I like to talk to my body and acknowledge what I’m feeling. So, often on really bad pain days, what I will say to my body is, “Thank you for communicating with me. I appreciate what you are trying to tell me. I’m doing my best to listen, and I’m doing my best to help you.”

Cheryl:  

I love that. I love that. It’s kind of like you would speak to a toddler, you know what I mean? It’s like okay, I see you’re having some big feelings. And you’re communicating those. No, I love it. And then, what is something that is bringing you joy right now?

Clare:  

Okay, so this is one thing that I love about being autistic. I notice things that other people don’t. And I find joy in big things and small things. So, I want to share a big thing that brings me joy, and a small thing that brings me joy. The big thing that brings me joy is I now have a little running buddy. It’s a little boy who has cerebral palsy and we run races together and I push his wheelchair while I run. And it is so much fun. He — I tell you, I have the best running partner ever. This kid is hilarious, and smart, and funny. And he loves being outside. I haven’t ever had so much fun running than these past few months where when we have started running together. It’s the best. He brings me so much joy. Then, the small thing that is bringing me joy is this absolutely dorky Sherpa blanket that I got from L.L.Bean. It has a hood and pockets. And it’s amazing. It’s so cozy. And it’s like, you’re just like, being wrapped in this warm, fluffy cloud. It makes me so happy every single day.

Cheryl:  

Oh, I’m also going to go look that up. That sounds amazing. And then, last one, this is a little bit of like a ‘What is the meaning of life’ question. But what does it mean for you to live a good life and thrive with a chronic illness or chronic condition?

Clare:  

So, for me, living a good life with chronic illness means that I’m not fighting with my body, that I am not trying to battle against my body. But instead, I am friends with my body. And I am acknowledging all the things that my body is going through and all the things my body has gone through. Like, my body has survived so much. It has come so far. And it’s really easy to be angry at your body once you get a chronic illness diagnosis. It can be so frustrating; it can be really sad. But at the end of the day, you kind of have to step back and be amazed at how much your body has been able to survive. And so, for me, living a good life with chronic illness doesn’t necessarily mean that I don’t have any flares or I don’t have bad days, but that I’m able to step back and acknowledge that my body has survived a lot. And it deserves not my anger or my irritation, but my friendship and my love. 

Cheryl:  

Oh, my gosh, I love that. I love that. Thank you so much. And where can people find you online? I will put your social media handle in the show notes, but.

Clare:  

So, I have in Instagram page called @ChronicQuirkiness, where I write about what it’s like to live life with a chronic illness and what it’s like to recover from autistic burnout. And I also post a lot of pictures of my dog.

Cheryl:  

That is very key to life.

Clare:  

If you would like to hear about what my life is like living with myofascial pain syndrome, and autism, and a very elderly pug mix, you can come and hang out with me.

Cheryl:  

I love it. Thank you so, so much. Is there anything else you want to say before we say goodbye?

Clare:  

I don’t think so. Thank you so much for having me, Cheryl.

Cheryl:  

Oh, my gosh, no, it has been such a pleasure. And again, I really appreciate just your openness about talking about all of everything we’ve discussed. It’s a lot to process. And I know that there are so many people listening right now who are feeling more hopeful and less alone, and like there maybe is a light at the end of the tunnel for them. So, thank you so much.

Clare:  

It was so good to talk with you.

Cheryl:  

Yay. Bye-bye for now.