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When You Fear Developing New Symptoms With Your Chronic Illness

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I hate feeling sick. I feel that chronic illness will inevitably rob me of so much joy and change my dreams to make them accommodate my chronic illness reality. I’ve been on this journey for a few years now without truly knowing it. I was just the “dramatic” and “weak” person in my past community. I never knew I was ill, I just felt so bad, so often.

Now that I’m further into this journey, I’ve been finding myself hyper-aware and inevitably nervous about when the next symptom will show up and what it will be.

I’ve started noticing these gradual changes…

More pain in my hips and difficulty climbing stairs. I woke up one night recently to the clothing I wore searing my skin and making me feel like I was literally on fire. I’ve suddenly felt myself about to faint in the middle of a walk outdoors, terrified I would fall and no one would know. And, my shoulders are starting to cramp while I drive and brain fog is setting in behind the wheel, causing me to focus extra hard and struggling to do so in the process.

I’m scared of what this illness will take from me, especially things that are part of my self-identity. My ability to play the piano; what if I can’t do that when my arms and hands are in too much pain? And then, the brain fog threatening my concentration and the task of putting together sentences as a writer. There’s the frustrating fatigue that puts a damper on my creativity. Sometimes, I get a great idea to strike me, but then fatigue strikes back and I’m suddenly too tired and need to nap. And as a nature lover, I need the outdoors, but sometimes I’m in too much pain to explore it.

Then there are the good days when the pain isn’t too bad and the brain fog not present. I push myself and then I pay for it for days afterward. I’ve always pushed through a challenge; I don’t like to take the “easy” route. But I’m learning I need to listen to my body, which is difficult because I’m learning I’ve always been in pain. What does a pain-free body feel like, anyway? What is it like not to feel some ailment?

Being hyper-aware of potentially new symptoms isn’t fun. If I’m quite honest, it’s downright exhausting. It’s a different kind of exhausting though. It’s the kind of exhaustion of the body and mind. It’s an additional weight on my shoulders and I’ll tell you, it can be heavy to carry.

That weight is heavy and bearing it alone is hard. I’m finding I can’t bottle up this fear or it will swallow me up in the end. I’ve had to share it with those I trust. I’ve had to try and not let that fear of the next new symptom be my grown-up boogyman. It’s not easy, but it’s something I’m determined to conquer.

Getty image by Vadim Cherenko.

Originally published: December 28, 2020
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