Andy

Fame and Fortune, CFS-Style

I was contacted a few days ago by the editor for the CFIDS Chronicle about my Presence of Mind post from over a year ago. I had contacted her around the time I wrote the article, but she was new to the job and just dug out our prior emails after all this time. My post is going to be published in the CFIDS Link that should be emailed to subscribers on Monday, so that's pretty neat.

I was also interviewed for an upcoming article (not written by me) on men with CFS that will appear in the Chronicle. I thought it might be informative to post the questions and my answers on the ole blog here.

1. We know and hear much more about women with CFS. What do you think people should know about men with CFS? What should they understand about how the illness affects men’s lives?

   CFS takes away some of the essence of what it is to be a man. In order to cope with the illness, a man has to shelve things like competition, physicality in general, and the desire to provide for loved ones.

2. 1. Do you view your CFS experience as more similar to or distinct from that of women who have the illness?

      As with most things, some elements are similar while others are different. I don’t know any other men with CFS, so it is hard to say if my experience as a man is really typical or not. On the whole, I find there to be more similarities to talk about with the women I know with the condition than there are differences.

   2. What do you think are the greatest similarities?

      Many of the symptoms are similar, particularly those that pertain to energy level, orthostatic intolerance, or emotional condition.

   3. What do you think are the greatest differences?

      I believe men tend to tackle the “CFS problem” in a very different way than women. For instance, many women seem to have a harder time coping with the emotional stresses brought on by the illness, but are fantastic at researching and implementing treatment options for themselves. Men tend to focus more on the “regular life” type elements, such as finding ways to exercise, work, or make decisions, and can maintain more of an even keel emotionally even when the internal stresses are great, but leave the medical aspect in the hands of doctors for good or ill.

3. I’ve heard from some men that they have trouble identifying with the information they find on CFS because it often speaks from a female perspective or is covered in predominantly women’s magazines. Have you experienced this dynamic? If so, could you share your experience/views?

   I have experienced this, particularly with support. My method of coping is quite different from most if not all support group members I have encountered, which places me on the outside of such circles in some ways.

4. What are your toughest/sharpest symptoms of CFS? How do you deal with them?

   Brain fog and orthostatic intolerance are my two biggest. I have yet to find effective means of combating these issues.

5. If you had just 1 minute to convey to the world what it’s like to be a man with CFS… any male-specific dynamics or insight… what would you say?

   Well, everyone probably has a different perspective, but I would say that CFS for a man is a constant exercise in living and dealing with frustration. This is probably true for women as well, but for a man you have to be flexible in ways that go very much against the grain for what a man typically thinks, wants and feels.

6. From the recent blog postings I’ve seen, you seem to stay as active as you can. I imagine your life pre-CFS included many activities and independence that people traditionally associate with men. Could you please share a brief story (just a paragraph or so) illustrating how CFS has interfered with those activities?

   I’ve always loved tennis. I took lessons as a kid and played on my high school team until my health started taking a toll on my extracurricular activities. Despite that I have continued to play as much as I can, because I can somehow handle this type of activity better than many others, such as walking or running, and it also happens to be great therapy.

   So for a while I played somewhat competitively and that faded as I started losing dexterity and endurance. After that I served 100 or so balls by myself every day, and that started to get harder too because my muscles were getting tighter all the time. Now I am fortunate enough to have a tennis partner who will drive and play with me once a week, but we just hit in an extremely casual manner. I can’t serve at all anymore without hurting myself, and in any case my serve is weak and useless even when I try. I had a great serve before CFS.

   Don’t get me wrong, I value our court time greatly, but what I really want to be doing is testing my skill against an opponent of similar skill, serving and hitting as hard and as accurately as I can while keeping the strategy of the game in mind. I miss that competition. I miss being able to push myself to my “real” limits instead of having to find creative compromises in order to play at all.

7. What approach to your illness/wellness do you feel has benefited you the most? What’s the crux of how you currently manage your life with CFS?

   I am deeply Christian, and my faith makes all the difference. I faced a battle with cancer earlier this year in addition to all of my CFS problems. During this time I connected even more deeply with my Christian faith. Instead of folding or just scraping by, I have managed to create three websites and form a design company for myself that hopefully will give me a chance at earning some actual income beyond an SSDI check. Faith was and continues to be the answer.

8. Is there anything else you’d like to share on the subject?

   I have a question for the rest of you men with CFS out there. How do you handle dating and relationships with your illness? I think we men have a higher wall to climb on this issue on account of the cultural expectations generally placed on us. Have you been able to fight past those expectations successfully?