Understanding Chronic Illness

Chronic illness manifests in ways that “normals” rarely understand. It’s the abstract effects that give me the most grief primarily because they’re so rarely understood and so often judged.

For me, energy is finite.

I have to recover from everything I do socially and professionally. If I’m active all week, I need a day of sleep to get past it. I also take three times longer to do the same things my colleagues do. Rest and work really chew up the hours, which leaves me with very little time to dedicate to friends and parties. Don’t take my absence or silence as a sign that I don’t care about you. I do. The worst consequence of chronic illness, for me, is when friends grow distant when I can’t dedicate as much time to them as they (and I) would like. I know you deserve the time. My body just won’t always comply.

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Judgment is worse than illness.

Chronic illness has a way of getting in the way of normal life: we often can’t do things that you can do. That is not our fault. I choose not to drive because I’ve never had a seizure-free stretch long enough to make me comfortable with the risks. For me, it’s a moral choice—I will not put someone else’s life in danger just so I can have an extra slice of freedom. Just about everyone who knows about it judges it, which is much worse than the inconvenience of not driving. It took a great deal of time and work to find peace with my decision, and when you remind me about how much I lose as a result, you’re undoing all that work.

I’m not stupid. But I am stupid.

My memory sucks balls. I struggle to process and retain information unless I have enough time to type it out. Some people shame me for my mistakes and memory. I promise my cognitive issues are more inconvenient to me than they are to you, so please try to be patient. Many, if not most, illnesses create that effect, as do medications. Some people deal with severe pain every hour on the hour. Mental health problems come with their own cognitive problems. We are not stupid. We just take longer to process the world around us. Give us time to put our thoughts together.

Positive Intentions can be worse than no intentions.

I’ve learned not to ask for help because most intentions are only that: intentions. Most people are compassionate enough to want to help an ill person, but the majority don’t follow through. I’m not entitled to your help, so the lack of it won’t upset me. I only ask that you only offer what you’re willing to give. Since we’re on the topic, offer specific things, and not a generic, “let me know if you need anything.” Most of us won’t take you up on the latter offer, but we’d be grateful for the former.

Weird symptoms are weird.

Hollywood movies offer a crap education about my illness, and sick people want to talk about cupcakes, not symptoms, so if you care about us, read about us. Google is a thing that exists.

Sometimes we need to be normal.

I get tired of pacing myself. I get sick of keeping a hygienic sleep pattern and squeaky-clean lifestyle, so every now and then, I spend a week or two behaving exactly like you. I go out when I want, walk where I want, and do as much work as I want. And yes, I pay for that eventually, but those active phases are okay and even healthy for me, so please don’t reign me in unless I’m making it a habit. I cope with my illness in a way that’s tolerable to me, and it won’t always make sense to you.

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