For the past 16 years I have had ME-CFS, and for the past 15 years I have been mostly housebound and very limited in activity. Even more than physical activity, social activity makes my symptoms worse. This means I can have very little interaction with others, including my family. And when I do, I feel much worse and can do much less for days or weeks afterwards.
But I have financial security, a beautiful and comfortable home with all the support services I need, a sympathetic doctor even though medical science can do little for me, and best of all, I have a loving, care-giving husband. With the Internet, e-mail, and this blog, I have friends all over the world. My life, though so limited, is good, rich in fact.
There are many, many people with ME-CFS who are completely without resources. Formerly professional people have become homeless. I know one. It’s not unusual for husbands to abandon wives with ME-CFS. I know one. There are women living alone, without care-givers, struggling to survive. I know three of them. Healthy friends disappear, unable to tolerate the unpredictability and limitations of our lives. Mine are long gone. Most medical practitioners know nothing about ME-CFS; and because they are ignorant, they diagnose the patient as neurotic or malingering. The government agencies charged with investigating and researching health issues ignore this condition and misuse the funds appropriated for it. Can you imagine what would happen to you if you suddenly became completely unable to earn income? It took five years for me to get Social Security Disability Insurance. Without my husband’s income, what would have happened to me? There are no social agencies established to provide support for people with ME-CFS.
Some day this illness or whatever it is will be understood. Maybe it can be prevented. Maybe there will be effective treatments. Because these eventualities have not yet been realized, many people who know someone with ME-CFS doubt the reality of their symptoms and disability. We usually look well. There are times when we may be able to function as a healthy person can–for a little while. That reinforces the skepticism of the unbelievers.
Worse than being in pain and unable to function is the knowledge that people, often people we care about, doubt that we are really ill.
ME-CFS is a devastating, life-changing condition from which recovery is exceedingly rare. It has taken away almost everything that had meaning for me. That life is gone. Nevertheless, because of the blessings given to me, my life is good. For so very many others, it is wretched, so unbearable that often the cause of death among people with ME-CFS is suicide.
The National CFIDS Foundation is working hard on our behalf. They accept donations online.