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5 Things My Chronic Illness Has Taught Me

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I’m 27 years old, I’ve had Crohn’s disease for four years and I’m on my way to a second diagnosis of Ehlers-Danlos syndrome. It’s tiring and challenging, and I don’t know if there will ever be a point where I think, “Hey, I got this – I know what I’m doing.” That’s not to say that it’s hopeless. I’ve learnt a lot since being poorly, such as a true appreciation of periods of “good” health, the importance of empathy and I’ve met a load of fantastic people who are going through similar experiences. Here are some other things my illnesses have taught me.

1. Big sleep does not mean rested.

When my conditions are active, all I want to do is sleep and the people around me often think this is recharging. The truth is, it’s like a computer going into sleep mode. The battery level is the same as before, it’s just a way of conserving it.

2. Working hard looks different to before.

With chronic illness, getting a result is not a linear process. Whether it’s working towards a new job or cleaning the house, it’s easy to feel like your falling behind everyone else if your body is letting you down. It’s not about abandoning everything for the sake of a single goal, it’s about celebrating small victories and getting there as well as possible.

A drawing of three skulls with the text "fine" underneath them as they wear Mickey Mouse looking head bands.

3. Treatment does not mean wellness.

This was something that took a long time for me to learn. Often the medication I take maintains a level of wellness for me that allows function. It may treat inflammation that reduces pain but it doesn’t get rid of it all together. There is no magic treatment that gets rid of it, or else we’d all be on it right? A lot of times, I’ve been asked by people around me if I’m “better now?” post treatment or medication.

4. It’s OK to not have an answer.

Chronic illness is random. It isn’t bothered if you’ve rested or eaten well. Sometimes the cells just don’t add up and your bod goes into flare mode. I’m still trying to stop overthinking when I’m in flare. Was it that food? That activity? That stress? Sometimes, it just is what it is.

5. That the person giving me the hardest time about my illnesses is me.

And boy do I. Having invisible conditions often makes me feel like I have to justify myself to other people. If anything, I work twice as hard as I did when I wasn’t sick because I take advantage of good health periods by doing everything. The thing is though, no one has ever said, “Hey, I don’t think you’re doing enough.” It’s something I’m trying to learn and I know it’s something loads of chronically ill people do too.

There are loads and loads. The longer I am ill, the more I learn, the more I change and the more people I meet who get it too. What have you learnt since becoming ill? What has changed? I’d love to know.

Photo by Ant Rozetsky on Unsplash

Originally published: September 21, 2018
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