Why I'm Letting Go of the 'Shame Spiral' I Experience With Chronic Illness

We’ve all experienced shame before. It usually happens when we do what we view to be wrong instead of what we know to be right. However, what do we do when our shame is caused not by an immoral act, but by simply existing?

I have been in plenty of doctor’s offices over the years, but none of my illnesses cause such a “shame spiral” as my fibromyalgia. My fibromyalgia causes severe chronic pain, fatigue, and cognitive issues (i.e. “fibro fog”). I’m often in too much pain to perform basic household tasks, much less work a full-time job. Sometimes it feels like an Olympic event might be easier than remembering an appointment. And my fatigue? I can sleep 12 hours a night and wake up more exhausted than when I went to bed.

In my experience, to have a chronic illness is to have a light of suspicion cast on you by others.

What did I do to be sick?
How can I look so healthy if I’m so ill?
Why can I manage to do my errands today, but yesterday I was in so much pain I couldn’t manage to get out of bed?

In today’s world, a chronic illness diagnosis can feel like having a moral failing. To be afflicted by such terrible pain, I must’ve done something to incur such wrath, like Eve and her proverbial fruit. It’s not that I look different. It’s that I look the same, but am somehow not the same. My limitations change how I interact in the world.

There’s ableism in thinking that because I don’t look the part of a disabled individual, I must somehow be “faking” it.

On the one hand, I’d love to blend into the crowd. I’d love to avoid the comments and the gossip when I post a selfie on social media, but lament my pain in a posting. It feels as if beauty doesn’t exist in pain, and to be suffering, one has to look the part. However, I can wear mascara and still be sick. I will go to great lengths to appear “normal.” I will monitor my appearance and behavior so I look healthy. I eat foods I’m not supposed to eat so I don’t seem “picky.” I’ve endured secondhand tobacco smoking, one of my known triggers, so I don’t offend anyone.

Anything to avoid feeling vulnerable. Anything to avoid feeling like I’m not like you.

I feel ashamed because I can’t work full-time and our society values our worth in our careers. A minimum wage cashier is viewed differently than the CEO. When you’re too ill to work, your time is somehow trivialized, as though because we don’t receive payment for hours invested, we’re somehow worth less.

I feel ashamed as a mother, when I haven’t volunteered like all the other moms, because there’s simply too many doctor’s appointments this week.

I feel ashamed as a friend when I was supposed to help them, and they ended up helping me.

However, I cannot endure this self-imposed albatross around my neck. I must overcome the fear my shame is rooted in. The fear of rejection, of not being viewed as worthy, of not being enough. The fear that it’s all in my head.

There’s a predilection because I don’t look sick enough to elicit a nod of sympathy from a stranger. I’m here to tell you that my fibromyalgia is real. I feel my pain every single day.

My worth is not determined by your ability to understand my illness.

It’s not necessary for me to justify myself.

I’ve got a long journey ahead. As a society, we prematurely judge others, which in turn can cause guilt and shame for the affected parties.

It’s time we understood that there are illnesses we can’t see, and there’s some pain that can’t be measured.

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