“When we feel vulnerable sharing something with someone, I think it’s because we are actually judging or shaming ourselves ... And then we’re afraid the other person will as well. We’re afraid they will confirm our worst fears about ourselves. That’s why it’s scary. We fear their rejection because we’re really fearing our own rejection of ourselves.” —Kara Loewenthiel
“The reward for conformity is that everyone likes you but yourself.” —Rita Mae Brown
I have fibromyalgia.
I was formally diagnosed a couple of years ago, but I’ve been living with it in some form since my early 20s. For years I thought it might be something else: rheumatoid arthritis, maybe, or a connective-tissue disorder. The diagnosis surprised me, but over time it has come to make sense.
The definition of fibromyalgia, as it stands now (the medical world doesn’t really understand it very well yet), is that it’s a neurological condition in which things that shouldn’t hurt do, and things that should only hurt a little hurt a lot. When I injure myself, my body heals but the pain lingers — my nervous system “learns” the pain, then struggles to unlearn it. Fibromyalgia often comes with fatigue, general aches, brain fog, trouble sleeping and other symptoms. For everyone who has it, it’s a bit different.
This is what it’s like for me: I’m in a little bit of pain every day, somewhere in my body. Often, it’s more than a little pain. Today, it’s focused in a spot next to my right shoulder blade. But I’m achy elsewhere, too — in my shoulders, my arms, my legs, my feet. Sometimes, I also feel like I’m coming down with the flu: my throat and eyes are scratchy, everything aches and I feel like I could sleep for days. I have one or two days like that each month. Even on a good day, my body gets stiff quickly, and standing up when I’ve been sitting a while means walking gingerly until my muscles joints loosen again.
Fibromyalgia flares often come on when I overdo it, physically or emotionally. If I spend an hour gardening or take a long walk, or even if just have a night of bad sleep, I’ll have flu-like symptoms the next day. It’s similar if I get really upset or stressed out by something. Sometimes it’s worth it — worth it to be fully alive and active in my body or in my emotions, even though I’ll likely feel lousy the next day. But generally I try to do things in moderation.
To look at me, you wouldn’t guess anything was amiss. This is what it means to be invisibly disabled.
It might sound like I’d be miserable all the time, but I’m not. There are bad days, and there are days when I grieve or feel like I’ll never feel good again, but they are pretty rare. This is my baseline and I’m pretty used to it, just like you’re used to yours.
The most common treatments for fibromyalgia are anticonvulsants like gabapentin and pregabalin, thought to keep the nervous system from overreacting and causing symptoms (they’re also used to prevent epileptic seizures, and to treat shingles pain). I haven’t tried them, largely because I am so sensitive to medications, and these ones are notorious for being difficult to get used to (and more difficult to come off of if they don’t work).
Instead, I take low doses of ibuprofen, which helps keep my baseline pain levels down. On bad days I have a whole menu of things to try: stretching, foam rolling or rolling against a pinky ball, THC or CBD tinctures, cannabis salves, heating pad, a bath with epsom salts, massage, chiropractic care, a nap. I’ve tried plenty of other things that don’t help, and I’m not looking for any advice. The best preventatives are good sleep, lots of hydration, and not too much (or too little) exercise or stress. But there’s only so much control I have — which is to say, not much. I’ve spent a lot of time coming to terms with the idea that some days I’ll feel like crap, but they will pass.
The causes of fibromyalgia are still not well understood, but some research points to chronic stress, especially the kind of stress we may carry if we’ve experienced adversity and trauma before we become adults. It’s nice to see this research making its way into mainstream publications after doctors not taking fibromyalgia seriously for decades.
I’ve kept this to myself for a long time, not wanting to be treated as different or less capable — or conversely as some sort of inspiration, achieving so much in the face of adversity. Ultimately I can’t control what others think, and the older I get, the less energy I have for hiding.