My reasons for disclosing personal information have nothing to do with feeling pressured. I started this blog, because I was emerging from incredible isolation and confusion into a place where I could put all of these awful experiences into context. Sharing has an important place in all this because isolation is so often a result of the disease. Never have a group of patients needed community more. I often think that there should be a way for CFS patients to live together communally, for company and to share services and economies of scale.
One of the reasons that people become doctors is because they believe that it will give them some kind of immunity when illness hits home. Most doctors have little awareness of this, are in denial, and it causes a separation between doctor and sick patients. When the patient is a doctor it is even worse, because the doctor doesn’t want to identify in any way. My colleagues to whom I went for help were the first to abandon ship, in order to disidentify. It was much easier for them to think that I was weak or overreacting to little things. The LLMD’s to whom I eventually turned validated the experience, but were engaging in voodoo for the most part. The fear and isolation I was experiencing made that validation and any hope of improvement, especially for my daughter, too compelling to listen to my own doubts. Their treatment required a suspension of disbelief on my part in order to participate, but I did anyway.
I got mail last night concerned about my dignity. I don’t feel undignified for sharing experiences that others may be able to use to help themselves or their loved ones. There is redemption in helping. What is undignified is the harm that is done to the individuals of this community on a daily basis because of the disbelief that comes from the complete misunderstanding of the disease. I want to make it clear that there is no immunity. I had a privileged upbringing and life. I was a doctor. I’ve heard from lots of doctors who’ve had experiences like mine. The doctors and lawyers, scientists, rich people are just as isolated and without help as everyone else. The disease is a great leveler.
I am so far past caring what anyone knows about me. I have nothing to hide. I’ve been wronged over and over and so have many of you reading this. I get contacted regularly by people who want to die because they have no hope. I wrote what I did yesterday, and other personal things at other times, in hope that it will help someone out there to realize what I have come to realize. It can all change in an instant and you are not alone.