Learning to Live With Chronic Illness


I’m sorry if this image is a trigger to you. It was one that so made me think MIGRAINE!!

I just finished reading Maia Sepp’s The Migraine Mafia. The title refers to the support group she found where she met others who were living with the same issues. She didn’t want to speak openly about the headaches and the effects they had on her life at first; but when she did, she discovered that she didn’t have to pretend she felt better than she really did to people who didn’t understand what she was experiencing.

How many times have we all caught ourselves doing exactly that?

I forget the power of support from people who get it. I forget how scary it is to be vulnerable with people when you first meet them and have felt completely alone in your pain and fatigue. Everyone who knows you thinks they know the answer for you. They don’t know your body, and they’re not doctors, so what makes them so sure they can tell you how to take care of yourself?

It was only when Viive started pushing back against those who didn’t get it and feeling some hope and control over the migraines that she began to take back her life.

It’s a lesson we can all relate to and remember when living with chronic illness and/or disability. I need to think about looking for or starting a support group to learn to live with what is going on in my body. People who don’t understand tell me “if you only did this or that, it would be better.” I wish the surgeries I’ve had would fix all the difficulties I’m living with. Now I have to learn to deal with different things so that I can keep trying to take back my life.


About lana1967

I'm a Southern girl at heart who wants to build a community of people who believe they can change the world with words like "love" and "freedom" when they become more than words, but actions in our work and our daily lives.
This entry was posted in #continuouspractice, book reviews, books, chronic illness, holding space, story and tagged , , . Bookmark the permalink.

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