Not Helping

“Aren’t you on medication? I thought it was helping. Why do you feel so bad?”

If you have a chronic illness, you’ve probably heard some variation of this ad nauseum. We live in a culture that expects some version of Star Trek medicine, where every problem can be fixed, every ailment can be cured, with the pass of an instrument or the click of a button. Or the swallowing of a pill. When reality doesn’t live up to expectations, confusion and suspicion of the sufferers reigns.

Now, obviously, some of those who say such things have the best of intentions. They genuinely care that another person is hurting and they want the hurt to stop. Then there are those whose voice is just a little too sharp, whose smile is just a little too forced, whose eyebrows rise a little too high. They don’t understand why help us not helping according to their expectations.

The problem is the expectation, not the help. Humans don’t exist in cookie cutter shapes, and our lives are as unique as we are. There is no pill, no therapy, no trekkie fix that can make every person fit the same mold. When wiring goes wrong, when internal connections “leak” or don’t match, there is no quick fix. There may be no fix at all. What help exists may simply make symptoms easier to endure.

Until it doesn’t. A hot day, a disagreement, a small pain, a touch, a deadline. Maybe today the brain can’t communicate with the hands. Maybe every sensation is magnified. Maybe sensations are so muted that the brain doesn’t have the tools to make decisions. Without outside help, those things can result in brutal public meltdowns or complete functional paralysis. With help, those days may allow getting out of bed, being able to muster a smile, have a conversation. They may allow the ability to say, “I can’t fulfill obligations today because I feel horrible.”

When society forces a cookie cutter ideal on sufferers of invisible illnesses, a new illness grows. It’s called self-doubt. “Maybe there’s nothing really wrong with me. Maybe I’m just selfish. Maybe I’m making it up. Maybe I should stop using my help. Maybe I’m just stupid and worthless.” Charybdis yaws, drowning talents and hope and purpose in the depths of misery.

“Aren’t you on medication? I thought it was helping. Why do you feel so bad?”