Monday, July 21, 2008

Is There A 12-Step Program For Chronic Illness?

I’ve been feeling kind of down lately, hence the lack of posting. I’ve had a lot to say, bottled up inside of me, but little willingness to write it.

It seems, as of the past few weeks, that my pain has diminished considerably.

However, I haven’t made it over that “month hump,” which I seem to be getting stuck on. There will be vast improvement for literally a month, and then boom, I hit bottom again.

When I walk to work and home, by the time I’m there, I feel like my calves are going to explode. And it still feels like hammers hitting my knees when I walk down the stairs.

It also seems to me that as one system starts to normalize, another one goes defunct. Lately, I have no appetite. I could go from breakfast to dinner without eating anything. The only thing that really makes me eat at all is the fact that I get kind of woozy and would prefer not to pass out.

It’s like the head is miles behind catching up with the body. The physical pain is mostly gone, but the emotional pain of a broken body remains.

And then, of course, there is the daunting thought of when will I hit bottom again? Because I know this is a question not of if, but when. It’s like an alcoholic who doesn’t realize until they’ve hit the bottom of the last bottle of alcohol in their stash that they have a problem.

When my “normal” friends talk about similar things that I am feeling, I feel resentful. Why should they have self-esteem issues? They don’t have a body that has betrayed them. And when I talk to people who have had similar experiences with illness, I find myself instantly connecting. But there must be some way to build a bridge between both worlds. After all, I used to be “normal,” if that means illness free.

I think at the age of 22, having just embarked on several journeys that mark the beginning of the rest of my life, there is still a lot about myself that I have yet to learn. Who I am as a scholar, for instance. What I achieve in graduate school has the potential to shape the rest of my career. And who I am as a woman with several chronic illnesses. I know that how I decide to live that life is my choice. And most days, I want to do it with dignity and grace, proving that I am more than a patient number, more than some medical diagnosis. But other days I do think it would be a lot easier to send the doctors packing and go it alone. Face Rheumatoid Arthritis and Lupus cold turkey. No meds, no doctors. Just me.

So, if there were a 12-step program for chronic illness, what would it be?

I think a lot of it goes back to control, something that I have a very hard time letting go of.


  1. Hi. If I was local, we could have started our own group! I'm in NJ. I was thinking the same thing today.

    I ordered a book by Martha Cleveland. It's called Chronic Illness and the Tweleve Steps. Until, it was recommended to me, I didn't know about it. I've gotten a lot out of 12 step programs. I guess I didn't see how it could be applied to chronic illness. The author explains it very well.

    There are other books about this topic.

    I was diagnosed with fibromyalgia about 9 yrs ago.

    Feel free to email me @ Best Wishes Lisa

  2. HI Leslie - In my book, Women Work and Autoimmune Disease: Keep Working, Girlfriend!, Iidentified 5 stages of living with chronic illness: diagnosis, denial, anger, acceptance and grief. Just like life and career stages, a person sometimes moves back and forth between the stages before succesfully moving into the next phase. Sometimes we just want to 'move on' but we're just not there yet.

    12 step programs? We each find the tools most helpful to us. At different times, different tools are more useful than others. This is true for healthy people and the chronically sick.

    But chronic illness, especially at your age, is particularly daunting because it's unusual and isolating. Your peers just don't get it. And of course, you want it to be over - or at least predictable.

    This will get easier some days -- and harder others. I'm not sure that helps - but you're not alone.

  3. Thanks for your comment, Lisa... and the book suggestion!

  4. Hi Rosalind,
    Thanks for your comment. I think what I was trying to get at was that sometimes I feel like my chronic illness is an addiction; like all I do is eat, sleep, and breath it. Sometimes, I think, if I just don't think about my illnesses, maybe things will be better. In reality, I know this isn't true; while I shouldn't let it consume me, I have to always be cognizant of what I can and can't do because of it. I don't know. I guess maybe that's what I was trying to say the first time around. Thanks always for reading!

  5. Although it's not a 12-step program, check out the Stanford Chronic Disease Self-Management program. See:
    After completing the six-week program, there is an online group for graduates:

  6. Leslie, Just found this 12-step program for chronic pain: