On Gratitude, and Off: Part 2

"Transformation happens through suffering." --Sonya Huber

In Part 1 of this article, I wrote about Sonya Huber's book, "Pain Woman Takes Your Keys and Other Essays from a Nervous System," and her reflections on having (or not having) gratitude for her RA. She argues that we shouldn't feel expected to be grateful for our disease, and that there needs to be better language available to talk about gratitude in the face of illness and suffering.

"What I want is more precision with the blunt language of gratitude," Huber explains. "I want more separation from the implicit requirement that we be happy for everything that happens to us--that we not mourn as a part of being grateful."

The pressure to see RA as a blessing

I agree with Huber that we shouldn't feel pressured (by family, friends, society) to see everything in life, including our RA, as some sort of blessing. Or to feel like we can't fully mourn or have other negative feelings about living with chronic pain and illness. We're supposed to be accepting, graceful, cheerful, and thankful--somehow--for getting struck by this nightmare of a disease. While that's a lovely thing to aspire to, it's just not that realistic.

Here's what's actually realistic with RA

Real life is sitting alone in your car after an appointment with your rheumatologist, head collapsed against the wheel, sobbing your eyes out. It's grieving for the person you once were: healthy, active, energetic, alive.

Real life is feeling so angry that you want to scream and swear and punch things and break dishes and maybe throw a chair or two around in your garage. God/Universe/Whoever: WHY DID YOU DO THIS TO ME?!

Real life is having a very complex relationship with gratitude when you live with an erratic and complicated disease like RA. Things aren't simple or black and white, in my experience. You can be thankful for some aspects of the disease while also hating it with a murderous, white-hot rage. RA can drastically change from day to day, and so can one's gratitude.

The sadness and hopelessness is normal

It's also completely normal to have times when you feel so unbelievably sad and hopeless and lost about what your life has become--or will never become, thanks to RA. It's natural to feel sadness and grief, no matter how long you've had the disease.

There could be a place for gratitude with RA...

On the other hand, I think there is a place for gratitude in the midst of suffering. While I'm not thankful that I got RA in the first place, I am thankful for the good things in my life that have happened as a result of having the disease. The people I've met and the friendships I've made from the RA and chronic illness communities are invaluable to me, and something for which I'm deeply grateful. If I had never gotten RA, I probably would have missed out on knowing these wonderful people.

I also feel gratitude for the lessons RA has taught me during the 22 years since I was diagnosed: resilience, strength, perseverance, flexibility, and appreciation for the little and genuine things in life. Becoming more self-aware and recognizing the importance of not taking people or things or time for granted is another "side effect" of living with RA--and one for which I'm very grateful.

"I don't want people to suffer, and I don't want to require them to welcome the destroyer itself," says Huber. "I want them to love themselves and all of their varied noble reactions in the face of destruction."

Yes, me too.

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