If you missed Part 1: ME/CFS & Men, you will want to go back to yesterday’s post and read over it. In Part 1, I discussed how ME/CFS affects men and their families and how the illness can be even more difficult in some ways for men because of how the disease strikes four times as many women as men and for other reasons as well. Just like female ME/CFS patients, men lose their identity, feel a huge social loss, and feel like they are letting themselves and other down because they are sick.
It’s also harder for men to seek out medical and psychological help because ME/CFS affects a very small percentage of the population.
It is common for men to try and explain away their symptoms and fatigue and assume they have just been working too hard or not getting enough rest. Because they don’t seek medical help right away, they further compromise their health by pushing themselves. Men usually do not seek medical help until their symptoms have become so severe that they can no longer work or engage in any type of activity. Once they do seek medical attention, ME/CFS is the last thing doctors consider because it is so rare in men. So further delays medical treatment and any hopes of getting any better.
ME/CFS men find it difficult to relate to information they find online and in books and pamphlets because it usually explains the illness from a woman’s perspective and it is usuallyfound in female magazines, etc. CFS men say that it makes them doubt their own experiences with the illness because they are unable to find information that pertains to them.
Andrew Mosmiller, a 29-year-old CFS sufferer, says that support groups present challenges as well:
My method of coping seems different from most of the support group members I’ve encountered, which places me on the outside of such circles in many ways.”
Online forums, social networks, etc. don’t seem to provide much benefit for the male patient either. Because most of these areas are predominantly female, the answers and posts are more emotionally based and men want suggestions on how to cope, not sympathy, apologies, or compassion. Mosmiller says:
The group in my area is very caring and responsible. But when I post a comment about having trouble with a specific situation in my life, I’m looking for support that includes some practical
suggestions. What I often get instead is lots of compassion but few recommendations. I appreciate this response, but I’m still left wondering what I can do.”
According to the CFIDS Association, there are currently no male support groups or online support by CFS men for CFS men.
Bill Hartwell says
Thank you for recognizing the unique problems we men face with ME. Unfortunately, there doesn’t seem to be any sort of online help for us – not even the little that’s available for women.
Any kind of references to online support for men would be VERY gratefully appreciated.