Let me introduce myself: I am 24, graduated, married and a young professional. Oh, and I also have a chronic pain/fatigue condition.
Yep. Right out there. Right up there with some of my biggest accomplishments, for all to see. Why?
Because it's time for invisible diseases to be part of the conversation.
While I was growing into an adult, getting a degree, getting married and getting my bearings in the professional world, my chronic illness was right there along with me.
For nearly seven years now, my daily life has been co-administrated by two entities with very different MOs: One says "Go! Do! Learn! Accomplish! Be!" The other says "We can either shower OR get the laundry put away." Here's the dilemma: I don't really know which it will be when I wake up. It's living a compromise between a life and career that demands the same every day, and a body that is unpredictable. In the midst of keeping up with day-to-day life, there are perpetual negotiations going on in the back of my head. Often when I have been accused of being unsocial or lazy for backing out of plans or changing my mind, it was really me having to decide what's worth the risk, or giving myself space to recoup. Unfortunately, it's a hard thing to explain when you "look fine." There's a invisible third party in the mix here, and ignoring it leaves a lot of the conversation out.
Because we deserve to be believed.
Young people with chronic
conditions, especially young women, are often not taken seriously. Chronic pain doesn't always get a name, because there aren't conclusive tests. After seven years, I still don't have a conclusive diagnosis, and maybe never will. Not having a name for the
thing you fight daily gets disheartening, and lonely. Long
before our friends, our professors, our significant others, our doctors and our
bosses questioned us, we questioned ourselves. While
I have been blessed with supportive, understanding people around me, I also know what it feels like to be told you're faking it. You're exaggerating. You were just fine yesterday! You're not trying hard enough. You're too young. You don't look sick. Maybe you just need to lose weight. Have you tried yoga? You Google too much. You worry too much.
Because it's not about a free pass.
It's about empathy and negotiation. As a college senior, I believed the only path to success was one paved with pretend. I feared looking weak, incapable, or like I was begging for sympathy. I pushed myself too hard some days, afraid that my professors would think that I'm making excuses. And yes, some days I didn't try hard enough. It was always in my mind, though, "Am I doing the right thing?" My condition was never a card I could play. The best example I have of the daily internal debate is a poem I wrote during my senior year. It written on a bad day—in a few minutes of heated anger - after years of fighting self-doubt culminated in a doctor telling me "be careful who I tell about the Fibromyalgia."
Please,
Do not believe the careful lie
I have learned to tell.
Sit straight, talk strong,
Act well.
Act well.
Act well,
And they will respect you.
They will listen.
They will hire.
Act well;
Ignore the needle-fire
In your bones.
You can cry when you are home.
Ignore the heaviness
in your head.
Talk smart instead.
They'll never know that you forget.
They'll never know it hurts to stand.
You're so confident!
So creative! In command!
I'm so tired.
I hurt.
I hurt.
Honest;
I want nothing more than to be honest
With you.
I want you to look into my eyes
And see the me behind the me I wear as a disguise.
I have lied to myself more
Than I will ever lie to you.
Me drags me through a lonely hell
In the unholy name of acting well.
Our moments of anger are our most revealing, and it took reading my own words for me to really understand how these thoughts affected me. Is it uncomfortable to be this transparent? Yes. But I am compelled to put this all "out there" for one simple reason:
Because honesty is healing.
Yes, I still push through my bad days -- we all do, at some point -- but I do it now with an openness that allows to me to say to others "You know what? Today sucks. I hurt. But I'm going to try." Some of us just have more bad days than others. But you know what makes a bad day worse? Ignoring your body. Pretending that "it's just allergies". Feeling like you're lying to everyone. Worrying that if you share too much, people will judge you. On the days I can't be my best, the least I should be able to be is honest.
Because we aren't alone.
When we share our struggles, we hear our echo come back to us from all around. You, too? You, too? You, too!
Statistics say that more young people than ever are entering the workforce with chronic fatigue and other chronic pain disorders. If you aren't one, you probably know one. You may work for one. You may someday hire one.
If you are one—you, too? Me, too! Not alone. You rock. Keep at it. We got this.
If you hire one of us, be patient. Be honest with your questions and concerns, and be empathetic when we answer.
Because what makes us weak also makes us strong.
Every hero has the backstory and weakness to overcome, right? That's what makes the story interesting. Chronic pain is mine. I have spent years learning, trying, pushing and fighting to be the best I can be, in spite of my chronic pain. It's the story for thousands of young adults in college and in the workforce. Every day that we look "just fine" is actually a victory.
And it's time for us to join the conversation. No more invisible.
