When I Was Asked If Getting My Fibromyalgia Diagnosis Young Was ‘Easier’

I’ve been “different” since the day I was born. I actually am not a fan of saying that. I would rather not focus on what I didn’t have growing up due to being raised in what I, and many other survivors, feel was an isolated religious cult. I didn’t go to school with other children (except one year in a religious school run by a “sister church” in my faith community). I didn’t have prom or boyfriends. I couldn’t wear jeans or celebrate Halloween. I never went to the beach like most people do during summer. I wore my first bikini at 27 years old.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

So, you get the point, I grew up kind of odd. I also was that kid who “complained” a lot and that made me feel very much like an anomaly among my peers. I always didn’t feel well, was tired or couldn’t play as much as other kids my age. I battled migraines, fatigue, digestion issues and so much more. The pain started showing up in my teen years, but only occasionally, and the flares (what I now know them to have been) would go away quicker. By my early 20s, the pain was there pretty much constantly. By 25 on, it was present in one form or another nearly every day.

Now, I’m closer to 30 and trying to make up for all the things I missed. A cult stole my childhood, chronic illness controls my adulthood.

And it really does.

I currently can’t work. I have to depend on someone for one thing or another. I have limitations I never dreamt of.

I was just recently asked by a physical therapist on my care team if somehow it was “easier” to get my diagnosis of fibromyalgia during my teens instead of adulthood, that maybe it made my pain tolerance higher and my outlook different? This person asked this after noting I had a different outlook than a lot of other people he worked with, that my attitude about my illness was “pretty incredible.”

I was honestly perplexed, because I wasn’t sure what vibe I was putting off. I mean, my workouts in physical therapy are times each week where I concentrate solely on me. I lock my phone up in my locker and try to not to worry about everyone who may “need” me. For one hour, I fight my illness head-on with no distractions. That gives me momentum toward my determination.

Back in that moment, though, I am weighing my response, telling myself there are some things you just don’t share (like my upbringing, I’m not new to this rodeo, after all). So, I simply say, “I mean, I try to have a positive outlook about it as often as I can. I can’t change my diagnosis, so positivity goes further than negativity.”

I pause, setting my jaw a bit tight for a moment and go on. “In some ways, I do think getting this diagnosis now would have been harder. To imagine having my whole life going great and this derails it? I can’t imagine that. On the other hand, I didn’t know I was sick when I was young. I just felt terrible all the time and weird. Everyone would just say, ‘That didn’t hurt,’ when it, in fact, really did hurt. I thought something was wrong with me. I just didn’t know I was sick. Because of that, it’s gotten in the way of me getting on my feet. But yeah, I think it would be worse to lose everything.”

That question preluded a ton of difficult emotions. Emotions and feelings that can still sneak up and catch me out of the blue, causing me to feel suddenly depressed.

I don’t really have the words to put how much I struggle not having the life I thought I could have. How upsetting it is my illness flared so badly right as I was getting on my feet. Or, how I once was controlled by a cult, but now chronic illness gets the honors. That trauma caused this sickness in me.

I don’t think it’s fair anyone goes through this. I don’t think it’s awesome the majority of people I socialize with are medical staff or patients in waiting rooms. That I can’t physically handle being fully able to support myself. That my circumstances cause my pride to take a serious hit.

My body doesn’t look sick to most people. My pain isn’t visible unless you know me very well and can see my struggles. And yet, I am sick and feel it every day. I almost feel having fibromyalgia for so long and so young translated into my ability to mask what I’m actually feeling. I grew up with people saying I wanted attention whenever I was feeling particularly poorly and nothing could be further from the truth. Their “attention” only made my symptoms worse. I wanted to hide. I wanted to feel better, and if I couldn’t, I wanted the privacy I needed to battle it in my own way.

Now, hiding my symptoms is done unconsciously on my part. It’s normal for me to inwardly be overwhelmed at all the information my body is giving me at once, to feel pain in so many different areas, it’s hard to say where it is. I keep it inside or grimace or groan quietly while doing a task, but it’s often barely noticeable.

In spite of that, though, it does exist. My pain is real. I have invisible illnesses that try to pummel me each and every day. I feel like we fight each other often. I fight back with things like physical therapy, giving it all I got as I hurl a punch in chronic illness’ direction. I celebrate when I know I did a good job and feel less fatigued or a bit less pain in the days afterward. But, I’m not the only one in this ring and chronic illness still gets to make its shot count. I celebrate maybe too much and do too many tasks to make up for what I’ve been missing, and the next thing I know, I’m down for the count. I win a round, chronic illness wins one. It’s back and forth, on and on. A day-to-day fight.

That day-to-day fight is what I’ve known for so long. Even when I didn’t have a diagnosis, even when my illness wasn’t validated — this fight is what I know, and yet don’t know, at the same time. I feel I balance being logical and emotional about my reality of being sick as best as I can. If that appears as positive to others, then I’ll take it. What I do know is I fight for me.

I fight for me. My future. My relationships and the people I love and love me in return. I keep moving in spite of the pain and rest within the pain. I’m learning how to be sick, but most of all how to be healthy in spite of that sickness. I couldn’t tell you what would have been easier. I can’t say there’s anything “easy” about being sick. What I know is it takes tough people to live the chronically ill life every, single day.