
Doctors refer you for tests. Prescribe medications. Review your labs. But doctors wonât remind you to treat yourself gently, with kindness and patience.
Iâve been living with undifferentiated connective tissue disease for 10 years now, and Iâm still learning how to do it. I donât know if there ever comes a time when you reach the finish line and achieve the âgold starâ 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 âinvisible,â thereâs 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 weâre not. Iâm not.
Which means there is no shame in saying I canât. I wonât. 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 canât stand on your toes today to reach the book on the shelf. When you canât 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 itâs 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 âstoicâ isnât necessarily a compliment. Your pain is your pain. Itâs valid. And you donât 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 â 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 itâs 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 â 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 canât do this alone. In recognizing your need for support and searching out others who âget it.â 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.
source https://www.programage.com/news/There_Is_No_Shame_in_Life_With_Chronic_Illness_1608100212342183.html
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