What I Wish Others Knew About Chronic Illness Before Telling Me I 'Should Exercise More'

I have Hashimoto’s disease, which is autoimmune hypothyroidism. Over the past few years, my symptoms have been getting increasingly worse and I’m now waiting to hear back from a rheumatologist confirming that part of why things have been getting worse is because I have either rheumatoid arthritis, or a combination of rheumatoid arthritis and fibromyalgia on top of the Hashimoto’s. My sister has been diagnosed with both. These are all autoimmune diseases, which is why I call myself a “spoonie” based on the essay by Christine Miserandino.

That’s the nice, gentle way to explain what a flare is like to someone. What I’m about to describe isn’t so gentle. “You should exercise more” is one of the most common “cures” we spoonies are advised to undertake. So, let’s look at what that’s like during a pain flare, shall we?

 

Imagine having the flu. The worst flu you’ve ever had. Your sed rate (the amount of red blood cells that clump together and fall in a tube of blood over time, a marker of inflammation) will be high, maybe as high as 10 or 15 if things are really bad and you’re otherwise in good health. Go above a 20, and you’re really going to feel it. Now double or triple that.

Now, imagine you’ve sprained/injured every joint in your body. They’re stiff. They’re sore. They might be swollen. They creak and ache and it takes at least an hour for you to feel like you’re really able to move without unbearable pain, and you have the worst flu you’ve ever had with a very high sed rate.

Now, imagine you have five-pound weights strapped to your ankles, wrists and neck. You can’t take them off. You have to carry them everywhere. With joints that ache and are swollen. With the worst flu you’ve ever had.

Now, imagine that your muscles won’t do what you tell them to do. They just won’t. They feel like you’ve run/lifted/exerted for an entire day. While you have five-pound weights strapped to your wrists, ankles and neck. With every joint in agony. While you have the worst flu you’ve ever had.

Now, imagine you can’t think your way through a shower and getting ready for work because you’re drunk. Not happy drunk, but “drank the worst rotgut I could find and am paying for it now” drunk. With rubbery muscles and weights strapped to you, every joint in agony, while you have the worst flu you’ve ever had.

Now, get up. Take a shower. Get dressed. Go to work. Work a full day. Feed yourself. Expend mental energy while at your job. Try to do a good job. Drive home. Tidy your house, if you can. Cook your dinner. Care for your family.

Can you “move more?” You can’t? Then you must be “weak” and “lazy” and “uninterested in taking care of your health.”

In other words, “you should move more” advice-giver, please take your ableism somewhere else, because you’re not helping.

This post originally appeared on Medium.

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Thinkstock photo via TataGD.