W: That was a very difficult issue for me and I think it is for many people. It’s an ongoing issue. The way you phrased the question suggests that it’s been resolved and I would say that I don’t know if that issue ever gets resolved. People, of course, want to have a life and the drive to still have that life is so strong. I think that’s a positive thing. I think often what keeps us going is the desire to continue to work, to continue to be able to spend time with family and friends or to be able to get out and take a walk. That drive is extremely important for healing, but it does have to be moderated. The tension between listening to your body, slowing down, getting the rest that you need, not pushing too hard and that continuing desire to do the things that make your life meaningful –– that’s an ongoing tension.
When you asked the question of how did you learn to listen to your body, to be honest, I would say I was forced to. My body collapsed. I had no choice. The minute I had an ounce of energy, I would always use it to write a little piece of an essay I was working on or do some client work or get up and sweep a floor. There’s always that sense of hope springs eternal. Every time that you have a little bit of energy, you think “Oh, well maybe I really can do such and such” so you try. What I would say is that I’m much better at staying within my limits. I may push, but I’m pushing within a much smaller range. I’m not way out of bounds anymore the way I was before I had such a huge collapse in 1995. Again, it was out of necessity, but I think on some level that lesson has been learned…at least I hope so.
R: I know that often others with CFS or FM know they need to rest and give their bodies time to heal but they feel a lot of pressure from their families to keep pushing themselves. As the time it was taking your body to heal stretched from weeks to months to years, did your family or friends ever express concern that perhaps you had given up? If so, how did you deal with that?
W: There was certainly a lot of misunderstanding in the early years. As I got stronger and we were out of crisis mode, both Bill and I started reading more about the illness and I think the more we read and learned, the more that misunderstanding diminished. But in those years when I was at my sickest, there was a great deal of misunderstanding. I think, in our family, it got focused particularly around issues of my going to see doctors, taking medications, trying this therapy or that therapy. Family and friends didn’t understand the severity of my illness, that even going to doctors would be too much for me. I felt pushed to go to doctors or to an alternative practitioner when, in my case, I had not had any success in the past doing those things.
When I did finally succumb to that pressure and go do those things, I didn’t experience any benefit. I knew that just staying quiet, taking care of myself, stress reduction, good diet –– those were the things that would make me better in time. Time was the key. But others were more impatient. Not to say that I wasn’t impatient, too, but I did trust my body when other people wanted me to run out and get help. I don’t want to give a misimpression here. I certainly was taking things…I was taking herbs for sleep, I was taking ibuprofen for pain, I was taking herbs for allergies, and I took antibiotics when I had an acute infection. But the running around to doctors, trying to find somebody who could make me better, that was what I felt was not appropriate given how ill I was.
R: So many patients tell me that they don’t feel like they’re the same person any more. When they are no longer able to work at the same job or participate in their favorite sport, they feel that they have lost their identity. In your book, you recount one time when you insisted to Bill, “I’m not my illness.” How did you manage to hang on to your sense of self, to maintain your identity in the midst of your illness?
W: That’s always a struggle. I think that most everyone who’s ill has a tremendous inner sense and inner drive to maintain that sense of self. I think that’s a very deep-rooted and instinctive drive. For me, I was actually able to continue working. There were only three months when I couldn’t work at all. I’m very fortunate that I had an established business as a writing consultant and I was able to continue working from bed. Previously I’d gone into an office to meet with clients. Not only could I no longer meet with them, I couldn’t talk with them over the phone. But I was able to write my responses. I read manuscripts and critiqued them and I was able to read a little bit each day and write a little bit each day and keep my business going that way. Initially I could only work half an hour a day. Then I got up to 45 minutes after three or four months, and finally up to an hour a day. It was exhausting and it took an enormous amount out of me but I absolutely wanted to do it. It was very important to me to feel like I could get back to work and could continue to maintain my business.
And then a couple of years later I was well enough to start to get back to my own writing. That was extremely important, too. I know I sacrificed other things in order to maintain both my work and my writing. I sacrificed a social life; I sacrificed getting out more because my need to maintain that professional life and professional identity and sense of self and creative work was so strong. I think that’s a choice that a lot of people with this illness make. I also needed to earn money so it was partially out of necessity, but certainly out of desire as well.
To read the rest of the interview, please continue to page three…
