I'm Not 'Sick.' I Have Fibromyalgia.
The struggle with fibromyalgia is that every day it’s something new. My everyday is a constant battle on an all-terrain track; full of dangers, no idea where I’m going or what I’ll hit next. I’m in an infinity roundabout of symptoms. Every obstacle is calculated to avoid risk but the outcome is never predictable no matter how hard I try. The variables don’t matter.
There are many symptoms of fibromyalgia, including:
- Chronic muscle pain, muscle spasms, or tightness
- Chronic severe fatigue and decreased energy
- Insomnia or waking up feeling just as tired as when you went to sleep
- Stiffness upon waking or after staying in one position for too long
- Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”)
- Abdominal pain, bloating, nausea, and constipation with no reportable gastrointestinal issue
- Chronic tension or migraine headaches
- Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold
- Anxiety and depression
- Numbness or tingling in the face, arms, hands, legs, or feet
- A feeling of swelling (without actual swelling) in the hands and feet
- Jaw and facial tenderness
- Costochondritis, inflammation of the cartilage that connects a rib to the breastbone
- It keeps going. They get even better. Like, allodynia, a heightened sensitivity to touch, which results in pain from things that normally would not cause discomfort, like wearing clothes.
For me, I struggle with pain and fatigue Every. Single. Day. That’s not just a little headache or I’m tired. That’s full body aches like you have the flu. That’s fatigue like you haven’t slept in 48 hours. That’s every day. That’s my constant baseline. My normal existing is you on a sick day. Or hungover. That’s how I live.
For reference, I’m 27 years old, 5’1″ and 120 pounds. I look healthy.
But, the other symptoms are the hardest part. They barrel through my body like it’s a pinball machine; constantly changing location and severity, often in sharp, fast pains, so fast I can barely catch my breath before it’s moved on. Regularly lasting for hours at a time; where my legs feel like they have 100-pound weights strapped to them. Usually while running my basic errands, it hits me like a ton of bricks that turn to sweat, and then I’m overheating so hard I have to “take a break,” because buying more than just toilet paper at Target is too hard. Eight hours of work at my full-time job feels like running a marathon.
The list goes on and on. I’ve resigned to just saying, “I don’t feel good, thanks for asking,” instead of trying to explain one of the myriad of ills I’m feeling at the moment.
Speaking of moments, that’s all I can think about. Right now in this moment of pain I exist in, in bed trying to distract myself from “it” (the pain). Tomorrow, in the moments before, during, and after my public transit commute. In three weeks, in the moments on the 30-hour travel I’m embarking on. How am I going to react? What’s going to flare (that’s how we describe “when sh*t hits the fan”)? How long will the transit take from X to Z location. Once I arrive at Z location, will I need to leave at any point? How much energy do I have to use in the eight hours I’m supposed to be working?
Stand up every 45 minutes to reduce pain level by five percent. Walk at least 4,000 steps to reduce pain level by 10 percent. Rest after 20 minutes of walking. Be in bed for at least nine hours to function at around 75 percent the next day.
Everything is a calculation because there’s a bug in my database.
There’s no pattern in my code anymore.
Everything is unknown.
At work, I consider telling a colleague more about why I was out “sick” yesterday. She asked, curiously, if I had figured out what made me sick. I responded playfully, “Sometimes I just get sick.” But the part of me that craves support and empathy begged me to tell the truth. The thing about fibromyalgia is that it is not like other things. The thing about fibromyalgia is that no one knows what it is.
The most common response is a twice-removed acknowledgment — they have an (often female) acquaintance or their “mom’s friend” had that. The conversation stops. It’s not like the goddamn flu. People know what that is. People get it. You’re sick.
Fibromyalgia is in a class of its own, and it’s different for everyone.
My elevator speech usually goes a little something like this: “I have a central nervous system disorder that causes widespread chronic pain and fatigue.” I try to make it sound bad, because it is bad.
Because I want people to pay attention.
I want people to know about fibromyalgia and what it does; the power it holds to destroy lives while lurking in the shadows. It masquerades as other diseases so we’re put through a gamut of tests that our insurance won’t cover. It turns my friends and family into skeptics. It makes people think (and makes me feel) like I’m a liar, faker, and lazy. It tries to take my job, my relationships, my love and passion for life.
I want everyone to know:
I’m not sick. I have fibromyalgia.
This blog was originally published on Medium.