, thank you! I have many similar stories, unfortunately. When I was first sick with CFS, I had no idea what was wrong with me. I had a diagnosis, but I was told nothing could be done. I was a freshman in college and had to quit school. I couldn't function. I was a very active girl and went into being unable to get out of bed to then not sleeping. Because I was told that I would probably not get well...yup, back in 1989 I was told that, I started telling myself I could will it away with help, so I started seeing a shrink. No doctor knew what to do; they all told me I was nuts and asked me if I was on drugs or if I had been molested by my deceased father. Was there abuse? You are hiding something....and this from regular docs. The ones who were supposed to help me.
After several tries of trying to get me on an antidepressant so that I could sleep (I wasn't getting one wink of sleep due to high cortisol levels through blood testing and a screwed up thyroid that the endocrinologist blamed on depression). I started having reactions to almost all antidepressants and at 18 years old, I came undone. Everyone knows how awful not sleeping is and being up all night from it. And then to be 18 and to be told..."Well, welcome to your new life, you may never get better. Just preparing you." after you were expecting a whole life ahead of you of happiness, a career, a husband.
No doctor knew what to do back in 1989 and so I was thought of as being nuts, even with the diagnosis of CFS or back then, CEBV. So, I started feeling that I was nuts because I had never been sick like this ever. It was so sudden and nothing was making it better. I was getting worse.
So, the shrink I was seeing admitted me into a psych ward, yet again. Why? I wasn't suicidal, but my weight dropped and I looked emaciated and so I seemed to them, to be severely depressed. I actually wanted to go in because I thought that it would cure me because I was being told by the shrink that it would and that's all I wanted. I wanted to get back to college, back to tennis, back to the love of my life.
They put me on a children's floor of a mental ward so that I wasn't in with severely disturbed people. The doctor was at least kind in that regard. They finally got me on a medicine so that I could sleep. So grateful for that. But, they started brainwashing me and telling me that I wasn't really physically sick. EBV wasn't a legitimate illness or virus. And, again....being 18, I started to become brainwashed. I was in there for 2 weeks, but when I came home, I was a different person. I was convinced that I was doing this to myself, because I had been told that and I was young and vulnerable. I was young and scared. I had no idea what an adrenal gland was, or a thyroid.
I blamed myself. I was told that my father's death was what was causing me to be sick. So, I fell for it because I wanted to get better and I would do anything. I tried to grieve his death, but I couldn't because that wasn't what it was.
After about 7 months of being super sick, I really started questioning their theory. I would sleep a ton and never feel good or rested and I wasn't grieving my father's death because I had already grieved. I would have fevers, swollen glands, I had no period, my thyroid was still a mess and I would have severe muscle twitching that would keep me awake all night. I had fever blisters that were constant. Physically, I was a mess. I was sick and I finally knew, this is an illness. I am not mental.
Anyway, you get the gist. I've been through a lot with this thing as we all have. It was an awful experience. Interesting, because I am older now and have so much on paper about my illness, including all of the other ailments and conditions I have. No one ever says, "She's not sick." They take me seriously now....however, they don't take CFS seriously. So, no matter what...that is forever the biggest issue. I have to say, I have Fibro, I have IC...that is taken seriously. The last allergist I went to said to me, "CFS is hard to get a diagnosis for. You have to go to Harvard for that diagnosis." I thought..what? Really, I never heard Harvard as being the place to go to get a diagnosis. They don't know anything.
Question is; will CFS or ME ever be taken seriously? Denmark is proving that we have a long way to go. Probably not even in my lifetime.