I May Not Be Dying, but My Illness Still Makes Me Scared


I was dying.

Not in the “OMG that’s so funny, I’m dying” way, or the “every second we’re alive we’re closer to the time we’re going to die” way, either. I was “we’re not sure if she’ll make it to her next doctor appointment” dying.

I was terrified.

Now, I’m not dying. But I’m still scared.

I’m scared I won’t be able to set out and accomplish everything I had imagined for myself. I’m scared I’ll have to settle for something less than (less than what, I don’t know). I’m scared I’ll develop a new autoimmune disease or my gastroparesis will get worse or dysautonomia will leave me bed-bound, or a combination of all three.

I’m scared I’ll never get better than I am right now, in this very moment. Which, granted, is a hell of a lot better than where I started, but is still not good enough.

I’m scared I’ll never create meaningful relationships because I’m a burden. I’m scared my health will scare others away. And I’m scared it won’t but I think it will so I’ll push others away first.

I’m scared I’ll have to prove myself to every new doctor. I’m scared I won’t find a doctor who cares about finding the root cause and I’ll be stuck on a million different prescriptions for a million different things. I’m scared my medications will stop working.

I’m scared I am more scared than angry. At least anger can be turned into motivation. Fear is debilitating.

I am scared that I won’t be able to make it on my own and will be forced to move back home. And while that isn’t the worst thing in the world, I’m scared my parents would come to resent me for it.

I’m scared I have “peaked,” that at 23 years old I’ve done all of the cool things I’m going to do and it’s all downhill from here.

I’m scared I’ll have to stay overnight in a hospital.

I’m scared I will never get back my independence – that I will always have to rely on someone for something and they’ll resent me for it. And I’ll resent them as another symbol of what I am not.

If I’m being truly honest, I’m scared of getting better. I don’t know what that is anymore.

I’m scared of the maintenance that comes with being chronically ill. Remembering all of the medications and vitamins and supplements. Charting symptoms. Forced time to rest. Conserving energy like it’s a precious resource. The doctor appointments, the exercise limitations, the dietary restrictions longer than my arm. I’m scared I’m not up to the challenge. I’m scared I’ll have to do it for the rest of my life.

I’m scared no one really understands how hard it is to live in a body that doesn’t work. I’m scared that when I complain, I’m seen as overdramatic. And when I put on a smile and force myself to get through the day, people think I’m OK, I’m not sick.

I’m scared I won’t be taken seriously. That I’ll be judged for not “looking sick” when I really and truly am.

I’m scared to publish this post. And I’m scared if I don’t it’ll eat me up inside.

And so, I hit submit.

And I breathe.

And I hope.

And that is all I can do.

That has to be enough.

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Thinkstock photo via KatarzynaBialasiewicz.


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