“Dr. Hayden’s” other Chronic Fatigue patient was thinking of trying a clinic I also happened to be considering. The patient felt unsure about the clinic and had asked Dr. Hayden to investigate. So, in the middle of my appointment, Dr. Hayden asked me.
Dr. Hayden’s research was to ask me. I must have already done the work the other patient was requesting. I pointed out that I was his patient too. I too would love Dr. Hayden’s help with checking out the new clinic.
Dr. Hayden said something about finding it hard to watch the other patient struggle with her condition and have tantrums that were hard on the people around her, including the patient’s husband and children.
In the end I gave Dr. Hayden my opinion on the clinic. But I also made it clear that I too struggle with CFS/FMS even if don’t feel I have the luxury of throwing regular tantrums. I’d rather stay focussed on solutions. If the perception of some people around me is that they are free to further overwhelm me, maybe I needed to set clearer boundaries.
“The problem is that you made it look too easy, Bola.” That was Keith in graduate school. I had come up with a programming solution that everybody had been saying was not possible. After months of thinking, the final program was short, elegant and a little mysterious looking. My elation was short-lived when the print-out came back with an A-.
But it had been knocked out of the park! Waaaaaayyy out! A++ please!! Keith speculated that the final result looked so simple that it had been hard for the professor to fully appreciate what I’d accomplished. Am I doing that again now with the way I’m solving the long, wrenching, complex puzzle my health has presented?
What is a healthy, personal boundary? And how does one set and maintain them without draining oneself further? Especially in a time of Chronic Fatigue?
I don’t know. But here’s what I’ve figured out so far:
- CFS is not well understood, medically or socially. As Margaret Lukens described in the first Realitynibs podcast, it’s an invisible limitation. If I’m going to insist on keeping my head rather than, say, regularly throwing tantrums, then there will be people who make demands on me that I can’t meet. I have to accept that many will not understand when I say no.
- I can’t control everything. I never could. But with the onset of CFS, I’m not even in a position to retain the illusion of control.
- I don’t have much experience with the day-to-day dynamics of maintaining relationships. It’s what I knew as a child and what I’ve continued as an adult. Changing this in the middle of CFS is particularly hard but I need to learn this now more than ever.
In other words, I’m learning to be independent of the opinion of others, to give up control and to maintain closer social ties.
A couple of years ago, my friend George noticed that whenever issues came up in my life that required me to set healthier boundaries, I usually ended up feeling worse afterwards. I experienced this again in the middle of writing this post, right after I’d written the three questions concerning boundaries above…
In the situation with Dr. Hayden, I found things particularly tricky because she’d gone out of her way to help me. But as the specific problem he was treating stabilized, it became harder and harder to set the appropriate boundaries and at the same time take in the healing she had to offer.
After I was diagnosed with Chronic Fatigue, it became imperative to find successful treatment. Now that I’m following a path to recovery, I see that the practical strategies I’ve developed for dealing with the social aspects are just as important. I’m a bit of a geek (albeit in Prada) so the technical aspects of treatment have come rather more naturally to me. Even so, I’ll share what I’ve managed to learn about healthy boundaries, alongside the stories that come from my treatment experience.