My Little Secret

I have a secret. It's small, to some, but to me, it's my world. People see me smiling and laughing, always ready with a friendly word or an ear to listen. They assume, because of my demeanor, that I'm happy.

My little secret is that, inside? I'm screaming. I don't smile because I'm happy, I smile to protect myself from a world of people who can't, don't, or won't understand. A world of people who say,

"Well, you don't look sick." and "It can't be that bad, you're being a baby, you need to grow up."

 A world of people who assume I'm lazy when in reality I'm fighting a battle they could never imagine.

I have more than one invisible illness. On the outside, most days, I look fine. Some days I limp, others I waddle because I limp on both legs. Some days I need a crutch, and others, the motorized chairs in the stores.

That last one is the hardest. I'm young, and appear healthy, so you can imagine some of the looks I get when I have to use a chair. People seem to assume I'm lazy or that I don't need it, that I should give it to someone who fits their mental picture of what a disabled person looks like. You don't know how hard it is to face those looks if you haven't faced them yourself.

I'll tell you another little secret; I'm glad you can't see how I feel. If you could, you would see a body covered in bruises and burns, wrapped in electrified barbed wire that of its own accord tightens or eases at random, giving a few moments of relief before it erases them with the next wave of sharp, stabbing, shocking pain that doesn't ever fully go away.

I don't know what life without pain is. My journey started at the age of 10 with a whiplash injury. Life got progressively worse from there. I remember waking up when I was 13 and I couldn't feel my legs, it took over an hour for me to be able to get out of bed. Doctor after doctor, test after test, looking like a junkie from the track marks in my arms from the blood draws.
Medications that sometimes helped and sometimes didn't, medications to treat the side effects of medications, I had a small pharmacy on my desk.

Those were my teenage years, and my early 20s. That was, and in many ways, still is my life. Except now, I'm 28. I can't work, my chronic illnesses cost me a marriage after only 8 months. I don't know what a normal life is because I've never had one. Ever. Best of all, according to social security, I'm not disabled. Never mind the two to three inch thick folder of my medical records. Never mind my doctors stating I can't work. I'm young, so I must just be lazy.

The thing is... I would be okay if it was just the pain. But it isn't. The overwhelming fatigue makes everything so much harder, even just sleeping because I wake up feeling as though I haven't slept in days, and it only gets worse as the day progresses until I barely have strength to move. My motor control goes to hell in a hand basket, so just picking things up is a craps shoot as to whether I'm picking it up, dropping it, or throwing it across the room.

What's the point of all of this, you ask? It's a plea. From me to you. If you know someone with a chronic illness, listen to them. Don't just hear, really listen. Learn about their conditions, find out if you can do anything to help, even if it's just being a sounding board for them to vent frustrations to. And last of all... If you should happen to see a healthy looking person in a motor chair, or parked in a handicapped space, please don't assume they're lazy, or healthy, or fine. Because they just might be fighting a battle you can't see.