Why I've Been Open About My Mental Health, but Not This Physical Condition

My journey with depression and anxiety has been going on for decades. I’ve never shied away from being open about when I’ve been through, but I certainly never went out of my way to “share” my struggles. A few years ago I started writing for The Mighty. My first article was submitted on a whim, but writing became something that let me share with others that they were not alone.

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

Initially, I didn’t share my articles with people I knew. I didn’t post them on social media or tell anyone. Eventually, though, I did start sharing them, and I became more and more a “mental health advocate” of sorts. What most people didn’t know was that I was still hiding a secret. A secret that cost me friends, ambitions and my dream job.

I have fibromyalgia. 

The impact is on clear display in my life, yet hard for people to pick up on. It’s no accident that the “little” things I have to do to get by have been so well-hidden — I designed my life around concealing it.

Fibromyalgia causes widespread pain in the body as if you’ve been beaten and burned, and is also causes debilitating fatigue that leaves you feeling like breathing takes conscious effort. It’s like having the flu, on a nuclear level… every day.

Some days are “good,” where the pain is bearable with medication, and I can function through the fatigue with just a nap or two. However, many days I can barely move and just minimal showering takes everything I have. Then there are times of a severe flare. It can leave me in urgent care on narcotic painkillers and still in tears. A severe flair can mean I can’t even stand the touch of air currents on my body, let alone the pressure of sitting or the pain of clothing. Living hurts.

It’s not just the pain though, it’s also the absolutely unbearable fatigue. I have urinated on myself because I didn’t have the energy to make it to the bathroom in time. I have left stores in the middle of shopping because I had to go nap in my car for 45 minutes before I passed out from exhaustion. I have laid on a couch feeling like my life force had been drained and just breathing was becoming a real challenge. It’s not just “being tired.” There isn’t a word for what it’s like.

It is a sense that every cell in your body is screaming and shutting down.

I’ve learned some tricks over the years. I have two towels in my bathroom — one fluffy big one, and one thin super lightweight one for when I don’t have the strength or energy to lift the regular one off the hook (better yet dry myself with it). I wear pads in my underwear in case I don’t quite make it to the bathroom. I have scissors by the coffeemaker in case my fingers hurt too much to tear open a packet of sweetener. But still, it has impacted my life more dramatically than just such lifestyle adjustments would reveal.

After nine seasons of doing entertainment production with the sports team I had idolized since childhood, I was forced to resign. The long nights, the set-up and tear-down of gear, the hours and hours on my feet, the stress of masking the often-agonizing pain, and of having to find a place to lie down where no one would find me because I was so tired I couldn’t walk — everything had simply become more than even my best efforts could handle. I came in many hours before I had to because I knew I would need breaks from the pain and rest from the exhaustion. But I never told anyone — and they never suspected a thing.

I was prescribed painkillers and stimulants which allowed me to continue through where my body desperately wanted me to stop. It was like walking on a broken leg just because a medication made you unable to feel it. You may not feel it as badly, but as a result, you are able to do things that cause more damage. I was still doing tremendous damage to myself, but I was artificially masking the cost of my “perseverance” with medication that allowed me to function as close to “normally” as possible.

Ultimately the well-concealed condition I was hiding — and my ability (or stubbornness) to push through it — cost me my health on a deep level. I began sleeping 20 hours a day on off-days, and all-day right up until I had to leave on the several nights a week I worked. I cried as I left the house, knowing the misery I was about to put myself through. But I loved the people and the place, and I didn’t want to let anyone down. I kept pushing — and eventually started passing out and getting sick. I began to have migraine and heart problems. It progressed to having full-blown grand mal (tonic-clonic) seizures, at which point I was forced to at least consider that I was sacrificing my health on a massive scale.

I had been battling fibromyalgia for over a decade, and it turns out everything I was doing to be the “best” at my job was ultimately what caused me to have to leave it. My brain didn’t want to believe I had to stop, but my body finally stopped giving me a choice.

Over a year later, some things have changed. My partner acts as my caregiver and it allows me to focus on writing and healing, rather than working and pushing myself. I nap when I need to, and I don’t push my body too far beyond its limits.

At first after resigning, I was incapacitated with exhaustion for months. I couldn’t function at all, and I felt ashamed and guilty that I wasn’t somehow “better yet.” I had hit a brick wall and my body had given out. But my body has improved slowly over time. I know I will never be a “normal” person — I will always have this condition that limits my life. Still, I wonder: Why I was willing to admit to friends and co-workers my depression and anxiety, but never my physical condition?

Part of me knows I didn’t want to be seen as weak or attention-seeking. And part of me knows that I was afraid no one would understand that I wasn’t exaggerating in the slightest. I still don’t often choose to share my reality with people, but I am trying to be more transparent and let people know what life is like with fibromyalgia. I openly discuss mental illness in the hopes of making others feel less alone, but there are also others who struggle with physical conditions which they are ashamed of or embarrassed about.

I owe it to them to show that they are not alone either.

For more, check out The Mighty’s condition guide to fibromyalgia.