very cool idea for a book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend!"
I watch Suze Orman a lot, and she mentions something I had a hard time putting my finger on, which is if you decide to stop working for whatever reason, illness or not, and depend entirely on your spouse, a couple things happen. One, you lose some or all of your power in the relationship. Two, you limit your options- it's harder to get back in the workforce than it is to remain in it. Three, you find you have less to talk about with your partner, and maybe needier.
Now, granted, I had an extremely wonderful non-working year after having a stroke, after I got my pain under control, of course. I spent the year writing songs, hanging out with friends and being creative. I felt very alive.
So I don't think you need a job to be interesting or to have a full life.
But eventually, I had to work- I was not married and even with medicaid, I still had expenses.
And now that I am married, my hubby offers to pay for everything(!) which is awesome, but I still feel the need to work. Fortunately, I can do what I do part-time, so it's not all-or-nothing. If I had to go work full-time in a high-stress job, I'd be in the hospital in 2 months.
So, it's an individual decision, and one that can change over time.
I don't have a definitive opinion on working or not, as I do on biopsies, because people's severity of lupus is so different from person to person, and even from year to year with the same person. But I do think most of us, left to our own devices, with no structure, nowhere to be, will just sit in our PJs and fritter the day away, and not feel too good about it after a while. It sounds great in theory, but once you've done it, you realize most of us don't have the discipline to structure our own day, every day, with no outside motivating force, like someone expecting you to be somewhere. The only reason I was so motivated during my year off, was that I was fighting for my life, fighting to get back everything I lost during the stroke, and fighting to beat my prognosis of needing dialysis and kidney transplants within 5 years. i was highly motivated to beat the odds, because I've seen the results of those who have to go through dialysis every other day, and the results of folks who never recover from strokes. So I had those motivating factors, and I looked so horrible, so pale, anemic, weak, hair falling out, puffy prednisone face, that I desperately needed something to bury myself in, so I lost myself in the creativity of writing songs.
Now that I look mostly like myself and am not so frantically fighting the near-impossible, no, I'm not nearly as motivated and I don't always use my free days well. So I work part-time, and I feel very good about that. I think keeping one foot in the workplace is a great compromise for me, because if -God forbid- anything happened to my husband I wouldn't be totally lost financially. And right now, we don't really need whatever money I earn, so it can serve as emergency money (if God forbid I end up in the hospital again) or savings. So that's where I'm at now. I tried for the longest time to work full-time and I realized it's just too much for me. I've gone into near-kidney failure (30% function) 3 times now. Now I just do a few shows a month (then sleep all day the next day) and teach guitar one afternoon a week. I feel like I have a life, but I'm not pushing myself into relapse. A tricky balance, but after 16 years with this diagnosis, I'm starting to learn the deep meaning of the serenity prayer: God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. All three sentences, so important.
Maybe next time I'll go further into how other tools from the 12-step program are useful in dealing with chronic illness. Because really, alcoholism is also a chronic illness, too. We can certainly learn from them.
