The first time I can remember having unexplained pain goes all the way back to when I was a little kid.
I can’t remember the exact age, but I was young enough that my parents still took me trick or treating and I had just outgrown a stroller.
I can’t remember what I dressed up as that year. But I can remember that as we walked along, I started feeling a pain so intense that I cried to my parents that it hurt too much to walk.
They jammed me into a stroller meant for one of the younger kids in the group, and one of the other kids collected extra candy for me. I went home in tears at this pain that would not stop.
This pain – radiating in my ankles, knees, and hip joints – is one that would become very familiar over the course of my lifetime.
It popped up at the most inconvenient moments, ruining my plans and leaving me laying in bed in tears with no relief. Advil, tylenol, motrin – none of it provided any relief.
We begged doctors for an explanation of what could be causing this pain and were told over and over the same explanation – “It must just be growing pains!”
Let me know the last time you had growing pains that left you sobbing in pain and unable to walk, and then we’ll talk.
Even after I turned 15 and it became obvious that I was not growing any bigger than 5’4”, this was the same response I received.
Eventually, I gave up asking and resigned myself to accept that there would just be some days when my joints just hurt really bad.
After a lifetime of experience, the pain was usually just a familiar afterthought.
Until the day it wasn’t just my legs that hurt anymore.
How I Knew That Something Was Actually Wrong
If we’re being honest, I’ve probably spent most of my life avoiding the fact that I have a chronic illness.
Whenever I see a new doctor and they have me fill out intake forms that ask for family history, I just leave my mom’s section blank. There’s never enough space to fill it out.
“Does your mom have any history of medical issues?” doctors ask blandly as they hustle to get through the required questions.
The better question to ask would be what medical issues DOESN’T she have a history of?
Fibromyalgia, blood clots, brain surgery, mental health issues, smoking, endometriosis, ovarian cysts, and more that became too much for me to keep track of as a teenager.
So deep down I knew my day would probably come, but apparently plausible deniability is a strong medication.
When a few months ago I was making dinner and all of a sudden found myself with shooting pains in my lower back that quickly grew so severe I could barely stand up, I was filled with a sense of dread almost immediately. I knew that I hadn’t completed even close to any level of physical activity that would cause this level of pain.
It was a moment I just knew – here it is. You can’t pretend anymore, Carrie.
And I did what any person in this day and age would do and I googled fibromyalgia, and it only took me reading one page to confirm what I already felt so surely.
Here they were, in a neat little list: all of the unexplained symptoms I had spent years asking doctors to explain for me. Sitting there in one place. Mocking me.
By the time I went to each of the 2 different appointments with 2 different doctors, I was just waiting for them to confirm what I already knew. Fibromyalgia.
Sorting Out The Mixed Feelings That Come With a Chronic Illness Diagnosis
It’s hard to explain the feeling that comes from finally getting a diagnosis.
On one hand, I felt like my life was over.
All the time that I had spent creating a life for myself washed away in a wave of disappointment when I realized that I essentially had to start over. The dreams I had envisioned for my life pummeled with a metaphorical brick labeled “invisible illness.”
But at the same time – relief.
A feeling of knowing that I wasn’t just overdramatic. That all the times I had felt so sick I had ended up in the ER, convinced I was dying, only to be told I wasn’t – it wasn’t really in my head. There was an explanation here. It was just that no one had ever taken the time to look for it.
Many researchers believe that fibromyalgia is a condition of the central nervous system, and is actually related to our brain and spinal cord’s ability to process pain signals. This means that people with fibromyalgia have an increased sensitivity to pain, as well as other sensory reactions such as light and noise.
There are some that believe that this can be attributed to trauma and toxic stress.
The mindset behind this is that when the stress response – aka the “fight or flight” response – is activated in our bodies for a prolonged period of time with no relief, it can cause permanent neurological damage.
Some research has shown that toxic stress can alter neurological pathways, especially in developing brains. This can lead to both long term emotional and physical damage.
Learning More About Invisible Illnesses
Invisible disabilities/illnesses is an umbrella term to talk about conditions that cause serious impact on an individual’s daily life but may not always be “visible.”
I like to use this term rather than chronic illness only because most info the government provides about chronic illness focuses on things like cancer, stroke, heart disease, etc.
Some examples of invisible illnesses include: chronic pain, chronic fatigue, endometriosis, crohn’s disease, ehlers danlos, IBS, lupus, lyme disease, POTS, mental health conditions, and much much more.
With many of these conditions, they have a serious impact on your ability to live your daily life.
As you can imagine, this is not what you want to be told in your twenties as you are getting ready to jumpstart your life.
When I realized that it was pretty likely I had fibromyalgia, it felt to me like a death sentence. The first thing I did was go on online forums to read about people’s “real life” experiences. I was horrified by some of the things I found.
I’m fortunate to have friends and other family who care about me enough to find the holes in my logic. My life was not, in fact, going completely down the drain.
My dad reminded me of the 10 people that he grew up with from the neighborhood who all have fibromyalgia and still manage to function.
My friend reminded me that there’s a large portion of the population that isn’t represented on online forums, and maybe those people didn’t answer because they were actually out enjoying spending time with their kids instead of writing nasty stuff on the internet.
They all together reminded me that my life was not over. Having an invisible illness does not mean that you are no longer allowed to have dreams, to have goals.
It just means that you might need to find a new path to get to them. And that’s okay.