My autoimmune disease diagnosis was a lesson in how often doctors dismiss women’s pain
I remember times when my dad couldn’t walk. While I was growing up, he’d put all of his energy into work, then return home completely broken by his pain. My dad was living with fibromyalgia, and at that time, not many people — other than those suffering from it — knew about the autoimmune disease. I, however, grew up familiar with the symptoms. After all, many of my aunts also suffered from the same chronic illness.
This chronic disease — characterized by widespread musculoskeletal pain and fatigue, as well as issues with sleep, memory, and mood — runs in my family.
Genetic predisposition increases your likelihood of getting fibromyalgia, and your risk increases even more if you’re a girl. There’s no clear cause — sometimes psychological stress or trauma from surgery or an accident can trigger it, but the disease can also develop slowly for no obvious reason. Chronic illnesses, as the name suggests, are long recurring and have no cure.
I was familiar with fibromyalgia, yes, but when I started experiencing the symptoms, it hit me so unexpectedly.
It started after I gave birth to my son during a 14-hour delivery with 2.5 hours of pushing and no epidural. Giving birth was so physically traumatic that I dislocated my jaw after intensely gritting my teeth while bearing down. Still, I healed — as you thankfully do after pushing something the size of a watermelon out of your vagina — and I went on with my life.
Except, my hands started hurting all the time.
I could feel weather changes in my bones. My arms, hips, and legs hurt terribly, but the worst pain was in my feet. They felt weak, bruised, and raw. My pain woke me up during the night, and I began having a reoccurring nightmare in which my arms and legs no longer worked. When I’d come home from my job every day, I’d find myself too broken to function, like my father had been.
I knew I had fibromyalgia, and that made it easier to explain to others — but I couldn’t find a doctor who would diagnose me.
There are no tests for fibro, and even though I had all the predispositions, my first two doctors told me to “just lose weight” to get rid of the pain.
This made me want to stop visiting doctors, but the pain and fatigue ruling my life had to go.
Eventually, I found a rheumatologist who took my concerns seriously.
She eliminated other autoimmune diseases, such as lupus and arthritis, and made the diagnosis I already knew: fibromyalgia.
Now, I live a relatively pain-free life. I have to tweak my meds, watch out for triggers, and constantly assess what my body can handle — but it’s not the same life my father had to live during the early days of his diagnosis. I’m lucky that it’s much better.
I may have made peace with my chronic illness diagnosis, but the problem goes far beyond my individual health.
Of the 50 million Americans living with chronic autoimmune issues, 75% are women.
Your 20s and 30s are a time when you should be focused on finding your place in the world — but it’s also when you’re most likely to be stricken by one of these diseases. Onset of chronic illnesses usually manifest during early adulthood, so this issue should be on every 20-something and 30-something’s radar.
Like me, many young women who start their journey towards diagnosis will find that their doctors are their biggest obstacles. The gender disparity that exists in the medical world has been well documented.
This means, if you’re a woman, doctors are less likely to believe you about your pain.
This reality just makes the path to recovery all the more difficult, and that’s why we have to stay informed to protect overselves. But luckily for our generation of chronic illness sufferers, there is so much more information available, and we’re starting to share our stories.
Celebs like Lady Gaga, Selena Gomez, Gina Rodriguez, and Jennifer Aniston have come forward with their own experiences with chronic illnesses, inspiring others to examine their own health. They serve as proof that, even though they have these chronic conditions, they are not defined by them.
And my fibromyalgia doesn’t define me either.