Getting On With an Autoimmune Life

Occasionally, my acceptance of my physical limitations needs some serious tweaking. This weekend was one of those times.

Early on in autoimmune disease, this psyche tune-up was a lengthy and angst filled period. Thankfully, these days when the I Don't Want To Do This Anymore temperament makes it's appearance, I have a better idea of what I need to do: bury my nose in books and articles that reinforce what I already know: I know that my autoimmune diseases can be managed, but not cured. I know my life has changed. I know that regardless of how long I moan and groan and wring my hands, I will still have to deal with those changes. I know that moving past self pity is the only way to get on with life in general.

Here's a few excerpts from some of the books that I find myself returning to when I need an attitude adjustment:

"A Delicate Balance - Living Successfully with Chronic Illness", by Susan Milstrey Wells, is a book in which the author describes her path to peaceful coexistence with Sjogren's syndrome:

"Striving for a delicate balance between work and play, rest and activity, relationships and solitude, and in grief and joy, we come to accept our limitations and rejoice in our gifts."

An excellent book with good information. Go read it.

In "You Don't Look Sick! Living Well with Invisible Chronic Illness", by Joy H. Selak and Steven S. Overman, MD, MPH, the authors chronicle Joy's experience with fibromyalgia and chronic fatigue syndrome. She came to the conclusion:

"It takes a very very long time to accept the irony that winning the war requires embracing the enemy. With the embrace comes a real choice: the choice to fight not against the illness, but for the self. The choice to build a life with meaning - even if that life contains illness."

I will never forget an early appointment with my rheumatologist, Dr. S. I sat in her exam room totally mired in self-pity. After letting me vent for a few minutes about the unfairness of it all, she put her hand on my shoulder, and looking me directly in my eyes said, "I'm so sorry this is so difficult. But I can't cure Sjogren's. You need to find some peace with that."

It was after that appointment that I read Selak's book and found myself highlighting the above quote. Framing my struggle in terms of fighting for something instead of against something put everything in a different perspective, one that seemed positive. I found myself thinking in terms of what concrete things that I could do to make my body healthier, instead of how I could defeat Sjogren's. I could take positive steps to take good care of myself, which put some sense of control back in my life. I could think of myself as someone with some power to change my body's health.

Yeah. I can think of one small thing that I can do every day that is good for me. That's do-able.

I feel better already.