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There Is No Shame in Life With Chronic Illness

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Doctors refer you for tests. Prescribe medications. Review your labs. But doctors won’t remind you to treat yourself gently, with kindness and patience.

I’ve been living with undifferentiated connective tissue disease for 10 years now, and I’m still learning how to do it. I don’t know if there ever comes a time when you reach the finish line and achieve the “gold star” for figuring it all out. You just keep figuring it out, moment-by-moment, day-by-day, and wake up the next day, and do it all again.

Because so many autoimmune diseases are “invisible,” there’s this tendency to try to act as if we are fine. As if we are the same person, inside and out, we were before becoming ill.

But we’re not. I’m not.

Which means there is no shame in saying I can’t. I won’t. I need. I want.

There is no shame in putting yourself at the top of your to-do-list. Spending time thinking about what needs to be done for yourself and for your sense of comfort. Much of life with an autoimmune disease is unpredictable. So focus on what you can control. The socks that feel most comfortable and keep you most snuggly. Your favorite tea stocked in the kitchen. A vase of flowers on the dining table.

There is no shame in crying. When you can’t stand on your toes today to reach the book on the shelf. When you can’t bend and reach for something on the bottom shelf of the fridge, wedged in the back. When emptying the dishwasher feels like a monumental task. When it’s not even the physical pain that drives you to tears, but the sheer exhaustion of it all. Of always feeling some level of pain.

There is no shame in admitting the severity of your pain. Crushing pain that makes the smallest daily tasks feel like endurance tests. Being called “stoic” isn’t necessarily a compliment. Your pain is your pain. It’s valid. And you don’t have to hide it inside.

There is no shame in using a disabled parking placard. In trying to make life a bit easier when you can. Parking at a meter without a time restraint. Parking a little closer to the museum entrance. You have the placard for a reason. Use it — without fear or embarrassment.

There is no shame in feeling angry. In wanting to curse, and actually cursing. For wanting to hit something, kick something, throw something, break something. For not just quietly accepting your lot in life. For not always feeling grateful that it’s not worse. For remembering it used to be a lot better.

There is no shame in asking for help, a hug, a break. Those closest to you may not automatically step in and offer — help, a hug, a break. You have to verbalize it. And know that they will gladly give it when asked.

There is no shame in admitting you can’t do this alone. In recognizing your need for support and searching out others who “get it.” Whether your support is online or in-person. In the form of written words or an honest conversation.

There is no shame in your body not working/functioning/behaving as it used to. Your body, your life, you are still a marvel. Never forget that.

There is no shame in who you are and how you feel.

There is no shame in needing to learn this lesson over and over again.

A banner promoting The Mighty's new No Shame group on The Mighty mobile app. Click to join.

Getty image by Veleri.

Originally published: December 16, 2020
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