PART TWO of my lovely morning with Mary. We talk about her Ehlers-Danlos syndrome diagnosis, how angry getting sick made me, and SO much more. Thanks for coming back. I am so happy you are here with us. <3
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‘You’re too young to be sick. Disease is all in the mind. You don’t look sick to me. I’m sure things will get better. Did you get this because you ___? My aunt’s cousin’s best friend who also has your disease is doing great! You should try this amazing herbal remedy. It could be worse. Everyone gets tired. You are faking it. It must be nice not having to go to work/school. You’re just having a bad day. You need to get more exercise. I wish I had time to take a nap. The power of positive thinking!! It will get better, just be patient. It’s all in your head. You’re just stressed. Depressed. Anxious. You need to get out more. Have you tried yoga???’
These are all actual things people have said to me over the years on the journey of my body actually falling apart from the inside. It’s hard to be chronically sick. In pain all the time, with no end in sight. AND YOU FEEL LIKE NO ONE BELIEVES YOU. Does any of this resonate with you? In this extra special 2-part episode, I sit down with my friend, Mary (who I DID NOT go to college with), as we try to unpack what it means to be chronically ill, even though we don’t look sick. We feel like we are dying, and NO ONE IS PAYING ATTENTION.
We talk about what it’s like to live with pain and uncertainty and bodies that cannot be trusted to work properly. We laugh and tell stories about the awful doctor experiences we have had. We share TONS of information about coping with chronic illness, what our headspaces are like, and what we do to pull ourselves out of the darkness when we feel so much pain all the time. We talked for so long that I had to split it into two parts and MAKE Mary get off the zoom call (with the promise of another follow-up episode soon!).
It is really hard to be a human when you don’t trust your own body and it’s functions, but you are not alone. I am very candid in my experiences in hopes to create a space where you also feel comfortable talking about yours. Remember, the absolute best and most powerful thing you can EVER say to someone with a chronic or invisible illness is: I believe you.
https://www.ehlers-danlos.com/?fbclid...
https://www.amazon.com/dp/0615825796/...
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