Throughout most of my life, I have off and on felt some version of unwell. I distinctly remember days when I would have the thought “This is just one of those weeks where my body feels broken for no reason.” Every time I went to the doctor to investigate, I was told I was probably just stressed. As an anxious and frequently stressed-out person, I took this at face value and used it to further validate my self-identification as an Anxious Person. Now don’t get me wrong, I am an anxious person; I have had my fair share of anxiety attacks and breakdowns. But this particular feeling of unwellness didn’t always make sense with my classic symptoms of anxiety.
One of these anomalous symptoms was vicious stomach pain that often became so debilitating I would be stuck in bed in a fetal position for hours, sometimes even throwing up. I stopped eating gluten on recommendation from a doctor and the stomach pains went away, for the most part. I would still experience distress on occasion, but never at the level I experienced pre-gluten. I initially chalked up many of my other symptoms to NCGS (non-Celiac gluten sensitivity), but they didn’t go away with the absence of gluten from my diet. I would still have dizzy spells where I would either faint or almost faint, heart palpitations, tingling in my hands and feet, headaches, and every other week it was pretty common for me to be heard saying “I think I’m getting sick,” though the sickness never manifested. I began to assume I was a hypochondriac and expanded my self-identity to Anxious Hypochondriac, especially since every visit to the doctor showed me to be healthy as a horse.
The proverbial poo hit the fan in December of 2019, the night before I was supposed to fly back East for the holidays. I had spent all day training clients at the gym and had done a rigorous workout with a couple of my co-trainers. I noticed myself feeling rather headachey and uncomfortable in the afternoon, so I treated myself to a Lyft home to avoid spending an hour on the bus. While in the Lyft, I noticed a mild burning sensation in my lungs every time I took a breath, and my headache started to grow worse. I thought nothing of it, assuming it was just my body feeling unusually fatigued after an intense workout. Later that night, I was awakened by an alarming heart rate (at rest it was closing in on 100 bpm, while my normal sleeping heart rate is 47 bpm) and intense nausea. I was also running a fever, my head felt like it was being lovingly crushed in a vice, and I could feel inflammation in my lungs when I breathed. Fun stuff, really. Anywho, I convinced myself that I had caught the flu and eventually got back to sleep, fully expecting to be sick on the plane the next day…except I felt almost completely normal upon waking, with the exception of a slight residual headache. Weird, right?
My next flare-up was in January, after I had already put the December episode out of my mind (I thought it had been a 24-hour bug). After the January flare, which again only lasted a day, I embarked on what seemed to be an endless cycle of doctors’ appointments, where I was faced with an endless cycle of mystified medical professionals. I was having flare-ups every one to two weeks when March 2020 rolled around and I finally saw a rheumatologist as the last resort. She diagnosed me with Familial Mediterranean Fever (FMF for short), a genetic chronic autoinflammatory disease. Classic FMF symptoms, for those who don’t know, include:
Fever
Abdominal pain
Chest pain
Painful swollen joints
Muscle aches
As I said, fun stuff! My symptoms also include episodes of tunnel vision/near fainting, heart palpitations, headaches, a feeling of internal trembling/shakiness, and being cold almost all the time. Triggers for flare-ups are numerous, but the most common for me are high impact workouts (specifically jumping rope), my period, and levels of high anxiety (i.e. the things most present in my life).
Initially after the diagnosis I felt crushed and helpless. With the onset of COVID-19 just starting to spike in the US, I was told that thanks to this disease, I would likely be at high risk of fatality from the virus and that I should proceed under the assumption that I was immune-compromised. One week after my diagnosis, San Francisco declared its first shelter-in-place mandate (to my immense relief).
Almost six months later, my perspective has changed quite a bit. I no longer feel crushed and helpless – medication keeps the flares under control and I can live a mostly normal life. I haven’t had a fever in months and that in itself is something to be grateful for. The biggest relief of all came when I was finally able to breathe without pain after nearly three months of lung inflammation. I will never be able to jump rope or run or do any high impact workouts again, which is honestly no great heartbreak since I hate running and I was never very good at jumping rope anyway. I consider myself extremely lucky that I can still do my strength training workouts and low impact cardio without exacerbating my condition – there are many folks with FMF out there who can’t even go for walks without flaring up. I am very very lucky.
Ultimately my health is nobody’s business, but I wanted to share my experience because I happen to work in an industry (fitness) that tends towards ableism and toxicity. So much of the language of fitness is centered around phrases like “make it burn” and “pushing to the max” and “no pain no gain” and I would like to say for the record that that is the bulliest of bullshit. As a trainer, I encourage my clients (and myself) to take rest days and extra rest time whenever it feels needed, and to never push past the point where they feel safe. Even with medication, I have days where my body is so drained and exhausted that just getting through my activities of daily living is a triumph. Working out is a gift. Moving your body is a gift. If you are able-bodied you are already immensely privileged.
Where am I going with all of this? Nowhere, really. Just sharing my experience, in case there are folks out there who have experienced anything similar. My gratitude for my body and its abilities despite its illness has increased exponentially over the past six months and I’m only sorry that it took something so drastic to make me feel that level of gratitude. As a trainer, I have always encouraged my clients to move because it makes them feel better, not because it puts them in pain, and now this holds even more value for me on a deep personal level. No one should ever dread a workout – if you feel dread before you work out, that’s a sign that it’s time to find another trainer or find another mode of movement. Find the movement that brings you happiness and keep pursuing it; never feel obligated to do what social media or toxic fitness culture dictates if it doesn’t make you happy.
To wrap this up (because holy cow it’s almost a novel) I will just say: stay safe, stay well, and stay in touch with the people you love.