My Chronic Illness Story

I’ve had strange symptoms for basically my entire life. As a teen my mom would bring me to the pediatrician and wish that they would approach me the way the doctors on House do it. Unfortunately they would only ever just treat whatever random symptom I was having that day and send me on my way, never offering an explanation for where the symptom came from.

Throughout high school I struggled with extreme cramps, seemingly random chronic pain throughout my body, costochondritis, gastrointestinal issues and severe seasonal allergies. All of this was chalked up to anxiety and depression. I would have moments where I would just start crying, and I wasn’t even sad. I would just be inconsolable for a time and I couldn’t explain why. 

In college things got better at first. My allergies improved, and while I still struggled with the gastrointestinal issues, cramps, and chronic pain it felt much more manageable. That is until I began to develop food allergies in the second half of my freshman year. I was having a biscotti with my coffee, something I did regularly since they sold them in the campus cafe, when I went into pre-anaphylaxis. I went to the campus nurse who gave me a large dose of benadryl and I avoided needing to go to the ER, luckily. Then it happened again, this time with a mango smoothie I’d been drinking regularly. And again, but with cherries. By the time things calmed down I’d acquired ten new food allergies. 

I continued to have worsening health, but I managed to get through another two years of college before taking some time off to try to figure things out. I started to put my foot down with doctors. I was pretty confident I had endometriosis since I’d found a few posts about it on Reddit that perfectly described my experience. In my head I started to put together all the pieces and attribute them to this potential condition, and it made as much sense as it could to me. It took trying a few different providers, but finally someone listened to me enough to look into it. Sure enough, I was diagnosed with endometriosis. I hoped everything would get better from there, but even with treatment for endo things didn’t change much.

Years went by. I wasn’t living a bad life, but I wasn’t doing everything I wanted to, either. As a kid I’d been a martial artist, but I stopped before going to college because I didn’t feel able to do it anymore. I missed it greatly, so I decided to give it a try again as a 25th birthday present to myself. It was hard, but I found myself able to keep up in some of the areas. In others however I struggled. I couldn’t seem to get my shoulders to stay in place for pushups, and every time I did a burpee I felt like I’d pass out. I made modifications where I needed to and did my very best. 

I didn’t know it at the time, but martial arts was actually starting to help my undiagnosed POTS. I was learning how to activate muscles in my legs while I went from a low stance to standing, which started to translate into being more able to transition from sitting to standing outside of class. What wasn’t helped by training was my undiagnosed EDS, but I wouldn’t figure that one out for quite a while.

My partner actually got a tiktok about POTS before I even learned about it, and he showed me. That started me down a rabbit hole of my own, eventually leading to me talking to my doctor about it and sure enough, receiving a POTS diagnosis. I was able to incorporate more electrolytes into my day, and began to understand my triggers. Things very slowly improved to a place where I felt able to function most days, but even more crucially on the days where I couldn’t I understood why and had a lot less judgement towards myself.

Fast forward a few more years and I was teaching martial arts. During a test a student who wasn’t doing well and knew it got a little overly frustrated, and during a technique accidentally dislocated my shoulder. It wasn’t my first dislocation, but something about this one created an ongoing issue in my joint. My shoulder couldn’t stop subluxing, and it was making it challenging to do basically everything. This time I owe my thanks to the physical therapist I was randomly assigned who immediately recognized the symptoms of h-EDS, starting the process towards that diagnosis as well.

Enter MCAS, the thing that had been my biggest problem all along without me having any idea. I’d been adding to my list of allergies a few times a year since college and experienced issues constantly that I had assumed were endo or POTS that were in reality Mast Cell Activation Syndrome. Getting on mast cell stabilizers totally changed my life. I still can’t eat any of my allergens, or even be in the same room as several of them, but I can go a few weeks without getting a cold now, which is often what my symptoms presented as. Going from being constantly sick to only being sick every other month or so is game changing. 

Strength training and martial arts have been the two lifestyle changes that I’ve made that have given me the most benefit. Meds and medical treatment are obviously at the top of the list of ways I feel better, but as far as things I do in my everyday life it has been incredible to find evidence-based strategies to improve my body’s function through strength. Exercise is one of the most important treatments for POTS, and that has been very true for me. Having strong muscles has been keeping my shoulder joint in place after the dislocation. My endo symptoms are more under control when I move my body regularly. All of it can be done, if done smartly and carefully. That’s my goal with Whatever Works. I want to help people do their best to feel their best. My ‘slogan’ is Your Best is Always Enough, because for those of us with chronic illness that is so true. Our best takes so much effort, and because of that we should be so proud of every effort we put in.

Keep doing your best!
Sadie