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Why Managing Expectations Is One of the Hardest Parts of Being Sick

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So, I have a few things “wrong” with me physically. I am a chronic migraineur, possibly have fibromyalgia, and definitely have hypoparathyroidism and hypocalcemia, anxiety, and depression. Those last two aren’t surprising, given the first four, though.

I say that I possibly have fibromyalgia because doctors can’t seem to agree, and I have symptoms that don’t fit with just that and migraines. To summarize, my body isn’t always my friend.

The hardest parts of living through this every single day are dealing with expectations—both high and low—and letting go of guilt.

Yeah, the pain is bad. And yeah, having so many appointments is inconvenient. And yeah, having my symptoms dictated by the weather sucks. But more than any of that, is dealing with how those things change the way that I am in the world and with other people.

When someone sets a high bar for me, when they expect me to achieve, I feel a massive pressure to meet or exceed it.

But sometimes my body simply won’t let me.

Telling someone that I have to fall short is devastating.

The opposite is also true, however. Knowing that someone hasn’t bothered to set any expectations at all because of my illness is just as heart-breaking.

These two, equally bad results are compounded when I am the one setting the initial bar. I still haven’t learned the secret to not beating myself up over small lapses, which leads me to guilt. I can’t control this. I’m going to say that again, for the people in the back: I cannot control this.

I can’t control when a barometric pressure drop sends me into a flare. I can’t control if my mind is fogged by aphasia. I can’t control it. So I learned that I had to let myself off the hook. The way I came to see it, blaming myself for my pain makes no more sense than blaming someone for rainy weather.

I am 20 years old. By all rights, I should be able to do what everybody else my age does, and what everybody probably twice my age can do. It is hard, every day, to remind myself that it’s OK. That I can do it. That setting limits and boundaries is actually a good thing. If you’re out there right now struggling, swimming and feeling like you’re drowning alone, or fighting to be heard and to be seen, listen closely.

It’s OK to feel guilty.

It’s OK to cry.

It’s OK to ask someone to change their expectations.

It’s OK to know when to stop.

You aren’t letting everyone down.

You aren’t a burden.

You are still worth it.

You are still important to this world.

This would usually be the part when I say that these are the words that I wished I could have heard when I started my journey. But that isn’t true. These are the words that I need to remind myself of every day because I’m still in the middle of my journey. And that’s OK too.

Originally published: June 26, 2019
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