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How Trying to Seem 'Normal' Can Make Chronic Illness More Invisible

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I started having symptoms in 2004, while running high school cross country. Passing out. Feeling dehydrated. My legs locking up mid-race.

But I won an entire meet. At a big invitational, I placed in the top 10, out of 250 runners. After collapsing at a state qualifying meet though, there was no more hiding.

Endocrinologists. Neuromuscular surgeons. Pain-conduction doctors. Cardiologists. Lots and lots of doctors.

No one could figure out what was wrong. “You are fine,” I was told hundreds of times.

When very few people believed that there was terribly wrong, even though I knew there was, I became very good at coping. Little secrets only I knew to get through the day.

Protein in the morning. Moving my legs at least once per minute to help with the pain. Getting up at the same time every morning. Not taking breaks throughout the day so I couldn’t feel how tired I was. Only breaking down when I was alone. Smiling a lot. Not changing my schedule too much. Regularly working out.

As someone who is naturally disciplined, people just thought I was taking good care of myself, even though I was just trying to hide how I was feeling and appear “normal.”

The coping skills started young.

Fast forward to 2015, 10 and a half years later. I was finally diagnosed with Hashimoto’s thyroiditis, an autoimmune disorder that eventually results in low thyroid hormone levels.

Ten and a half years of coping skills — skills that allowed me to graduate with a 3.85 GPA from college, and receive my master’s degree one year later. Coping skills that allowed me to run two half marathons.

Then I crashed hard.

And at the time of diagnosis, I was unemployed for the second time at 25, because I didn’t have the energy to make it through a work day. It was not until I went on an elimination diet that I realized I could lose weight, gain some energy, and yet still feel exhausted.

Was there a different kind of energy than physical energy?

Was there a different kind of exhaustion besides physical exhaustion?

Yes! Autoimmune diseases, including Hashimoto’s have a huge effect on the brain. I may “look great” to someone else, but I’m forgetting common words, people’s names, and I struggle to sequence events, like how to make an omelette for breakfast.

“If you look great, you must be feeling great” is a dangerous assumption.

Chronic fatigue, chronic pain, and chronic brain inflammation cannot be detected by a casual glance.

And here’s the truth: a lot of times I look better than I feel, because my illnesses are often invisible and I need to do a lot of mental and physical preparation before showing up in public.

Sometimes, if I’m really exhausted, I’ll need to rest the whole day before going to an event at night, and I’ll still probably leave early.

Maybe I look more rested than I feel because I did lay in bed all day.

Maybe I can hang out an hour longer, because I sat in a sauna, had an Epsom salt bath, and did a breath work practice.

There is so much pain, anxiety and exhaustion that is invisible. And I am brave for showing up, as I am.

Here’s a simple change that would make a huge difference.

Instead of saying, “You look great,” opt for “How are you feeling right now?”

If I received five dollars every time someone said, “You look great” when I felt terrible, I might be able to afford my medical treatments.

So please, if you have someone in your life with a chronic illness, remember there is more to their condition than what you can see.

Originally published: August 5, 2019
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