On top of this, I felt a sense of permanent exhaustion, the kind you might feel during a particularly bad hangover. Just standing up for too long felt like I’d been running a marathon. My mind stopped working properly; I couldn’t focus and I couldn’t remember little details. It felt as though I was being held upside down underwater.
As time went by, I began to feel something else: pain. It was a localized sort of pain that would migrate throughout my body. For a few days, I felt like my left arm had been trapped in a door; then I felt like my ankles had been run over by a car, and then like my stomach had been punctured by metal skewers.
Eventually, I was diagnosed with fibromyalgia, as well as myalgic encephalomyelitis, or M.E., which is more commonly known as chronic fatigue syndrome. Both are chronic conditions: fibromyalgia causes intense feelings of pain, while M.E. is linked to a general sense of exhaustion. (Some doctors treat the two as separate conditions, while others believe that one is merely a symptom of the other.)
Fibromyalgia is rare, but unfortunately not uncommon: there are 5 million people in the United States with the condition. While the cause of fibromyalgia is controversial and not well-understood, recent studies suggest that it can be caused by some form of muscle trauma, while some researchers speculate that ME is caused by an issue with the body’s regulation of blood sugar.
After Lady Gaga disclosed her own fibromyalgia diagnosis, the condition has become a topic of public conversation. (I also wrote a novel, Carnivore, inspired by my struggle with the condition.) Yet much of the conversation has been driven by women like Lady Gaga, because the disease is much more common among women: in fact, according to some estimates, only 10% of people with fibromyalgia are male. I am one of that 10 percent.
Because fibromyalgia is more common among women, it’s tough for men to get an accurate diagnosis. Indeed, it took me years before doctors finally gave a name to what was wrong with me. For years, I was told I had anxiety or depression, or just normal growing pains.
When I went to a specialist and suggested that I might have fibromyalgia, based on my own internet research, I finally got the confirmation I had been seeking. But my diagnosis was not a solution. Instead, it was a source of further frustration, because while there are many methods of treatment, there is no one-size-fits-all cure for fibromyalgia. I didn’t have a doctor. I didn’t have a treatment plan. And I didn’t have any hope.
Thanks to fibromyalgia, I lost the ability to go out and meet new people. I lost touch with my friends. Sometimes, I even lost energy in the middle of sex, so I would have to stop. I fell into fits of rage and would lash out at the people I loved, because I was terrified and confused by the invisible thing tormenting me. Everyone else my age had gotten the hell out of high school and were embracing the joys of freedom and self-discovery. Instead, I was disintegrating from the inside out, for reasons I couldn’t explain or understand. Fibromyalgia turned me from an athlete into a zombie. It stole my body and my youth. But after I finished my novel, I wanted to be able to exercise again. I wanted to be able to feel my own body, instead of feeling like a ghost.
I started doing research, but I couldn’t figure out what kind of exercise I was supposed to be doing. I quickly realized that nearly all the books and articles I read about fibromyalgia and exercise were targeted at older women. They generally offered recommendations for stretching routines, followed by gentle walking. I couldn’t find anything for young men with fibromyalgia who actually wanted to exercise their arm and chest muscles. I wanted to feel the pleasurable burn I felt during my teenage gym-going days, so I had to come up with a strategy by myself.
The first time I tried adopting a fitness routine, I managed probably three pull-ups at my gym before crawling home. After that, I was so exhausted that I couldn’t leave bed for three days. But I went back the next week and did it again. And again the next week. And again.
I quickly learned what would and wouldn’t work for me. Occasionally, I could bike or walk somewhere on my good days, but anything that raised my heart rate put me under too much strain. I needed to be outside the prison of my cramped apartment, but I found gyms too stressful: it wasn’t easy to rest between sets like I needed to. While learning what my body could and couldn’t take, I got “fibro-flares,” or flare-ups of my symptoms. During those times, I could be stuck in bed for days. Through trial and error, however, I eventually found a type of exercise that I loved: calisthenics.
Calisthenics are essentially different versions of body-weight exercises like pull-ups, squats, and dips. Calisthenics can be done anywhere, but they are often done outdoors, in places like public parks, where there are bars that can be used for pull-ups and dips. Being required to go outdoors as part of the exercise routine definitely had mental health benefits for someone like me, who is generally bed-bound.
I found great calisthenics moves from YouTube channels like THENX and fitness vloggers like Austin Denham. But of course, most of the tutorials are aimed at able-bodied young men who have the ability to work out for long periods of time. I needed to figure out how to adjust these moves for my own needs and fitness goals.
I learned how to pace myself and listen to the warning signs from my body. For me, the telltale sign that I’ve gone too far is a heat that grows in my neck, until it feels like I’m being strangled by hands of boiling water. When I feel that, I have to call it quits immediately. I tried to resist the impulse to push through my disability, which I knew would invariably make my illness worse. Pacing was one of the hardest things I had to learn about having fibromyalgia. I tried to learn how to be flexible, how to forgive myself, and how to cope with setbacks.
Now, I have my own strict fitness regimen: approximately three times a week, I go through a 15-minute full-body stretching routine, borrowed from online physiotherapy guides, which focus on very gentle movements. I then progress to a light calisthenics routine, which is a circuit of about six moves: 15 push-ups, 9 pull-ups, 10 dips, a 40-second bridge, 9 Australian pull-ups, and then maybe a special move like a handstand. I take minute-long breaks between each move, and five-minute-long breaks between each circuit. Sometimes, I can only do one circuit, sometimes I can do three.
Initially, I only enjoyed mental benefits from my routine. With no job, no money, and no social life, they were my way of fighting back. Doing a few short workouts gave me something I could point to and say I had accomplished in a week, however hard they might have been. But they didn’t bring me any pain relief, nor did they bring any gains.
A few months later, however, I realized that after I’d finished my last press-up, my body felt like it was filled with pulsating liquid gold, which hummed through all of my arteries. It was a rush unlike anything I’d felt in nearly a decade. Were these the endorphins I’d read so much about? I couldn’t believe it. I wanted to cry, or shout, or hug someone. For the first time ever, my symptoms lifted, and I felt… energy.
This window of pain relief didn’t last long, and my fibromyalgia remains fairly severe. But with patience and perseverance, I am slowly making gains in technique and pain reduction.
The basic fact remains that there is no cure for fibromyalgia, and a reliable treatment is still a long way off. There are so many people whose lives are destroyed by it, and by M.E. – but these disease still receive almost no research funding and don’t have the level of cultural recognition that they ought to have. Hopefully, someone as famous as Lady Gaga can help to raise awareness around it, but it is largely an invisible epidemic — and as a man, I’m an invisible demographic within an invisible epidemic.
One of the worst things about fibromyalgia isn’t the physical pain, but the emotional pain of loneliness and isolation. Writing my novel Carnivore was an attempt to bring visibility to this invisible epidemic by trying to find beauty beyond the pain. I hope I can find ways to feel less isolated, but I suppose it will take a long time. And in those fleeting moments when I am writing or exercising, for just a brief moment I feel some control over my own illness — and in those moments, I feel no pain at all.