I know I have trouble forgiving myself. Not so much for having previously been the type A person who was impatient with the slow and the infirm...but I come up with various ways to reproach myself for having done various things wrong in my life. I think if I had done X, Y and Z I would have been better "prepared" to deal with this illness. That somehow if I had set my life up better, I could have protected myself from feeling isolated and afraid when this happened to me.
I think I am beginning to grasp that this has been an unfair expectation to place on myself.
But was it really preventable? First of all, none of us were informed. The CDC and media hid this disease. I remember when I got sick in 91 and I started to research and I found that there were already support groups for this disease, I was so enraged. Because we were not informed. Maybe if we had been informed, we could have been more careful in our lives, more cautious. I don't know if that would have prevented us from getting this, but it might have helped. And that just makes me mad to this day.
I was a casualty of a covered up outbreak on Long Island, NY in 1991. When I went to my doctor sick, he said he was seeing alot of this disease and he knew exactly what I had. He flat out told me there was an outbreak all over Long Island and that I had CFIDS. He never diagnosed me with "CFS", it was CFIDS and that is what I got my disability on.
My mother called the CDC and Social Security at that time. She was told it was a virus by the CDC! And that was in January of 1991. And Social Security at that time, told her that there was such a huge outbreak of CFIDS that they were setting up a special division at Social Security to handle it! Again, that was January 1991. She was also told that this disease was more debilitating than AIDS.
Within six months, there was never a mention of the outbreak again. There had never been any media coverage of this outbreak other than some small blurb on the news about a handful of people in an apartment building getting sick with "something". Nothing was ever mentioned again about the special division at Social Security for CFIDS. But what I can tell you all is, I was given disability without the huge fight everyone has today. The minute I went in to the SS doctor and SS shrink, they knew I had it and they gave me disability. Because you don't take a 21 year old in top military body condition who goes to a gym two and a half hours a day and was a straight A Dean's List in college and suddenly have that person not be able to do a thing. Plus, I presented with swollen spleen, enlarged liver, swollen glands, a million physical symptoms that they could not ignore. They knew I had it.
So, could we have avoided it or anything? I don't know. I think if you are genetically susceptible, it won't matter, you will get it anyway if you encounter it. But I got it from a guy I started dating, and maybe, if we had been informed, I might not have been so quick to be dating around or kissing anyone. I guess we'll never know.
I knew someone who was seeing Dr. Cheney. She was a lot like me in that she had Fibro for nearly a decade before getting CFS. She was into aerobics when she got CFS and blamed the exercise. Dr. Cheney said if it wasn't the aerobics it would have been something else. I don't know what he meant, but possibly he meant there are a lot of pathways to getting this disease. I, too, was heavily into water aerobics when I beccame ill. I try to remember Dr. Cheney's words and not blame the exercise.
Still, have you met someone with this disease who wasn't a type A? I haven't. However, it would be just like type A's to gravitate to forums and support groups.
People who were very driven, motivated, active, "Type A" before the illness are probably the people who don't become *completely* invisible once they have the illness. I can easily imagine that many people who get the illness just drop out of sight completely.
"Blaming" exercise for getting CFS?? Huh?? Yeah, I was a big exerciser too before I got sick. An hour at the gym 5-6 days a week. Exercise is a very healthy thing to do, unless you happen to get CFS. It would be like saying people shouldn't eat food because of the risk of getting a food-borne illness, or should only eat Twinkies because green vegetables are sometimes contaminated.
Applause for your excellent blog. I really enjoyed it. You can write!
I ran a support group for 10 yrs., mostly fibro, but since there was no CFS group in our county, I got plenty of CFSers too. I did meet people who were not type A who had it, but I noticed something consistent about them compared with their other family members who were Type A. In every case, the Type A person had a far worse case of it than the Type B or C person. I had a neighbor who is a Type C, who had to change to an easier job, but was able to hold down a full time job and do some social things too. Her mom also had it, and was Type A. She was much sicker.
I am quoting a Rheumatologist who treated me and whom I used to work with on setting up seminars on fibro, etc., and who got to know me quite well. She told me I was "a Type AAA and proud of it". We both laughed. It's true, sadly, and I still push too hard. When I crash after the push, I can look at what I accomplished and think: "I did that, despite this da*n disease". Somehow, that makes it worth it to me, but I know it prevents improvement and has sped up progression. I am so Type A, I don't care. I can't seem to help it.
I met many in the support group who felt they had worked themselves into the disease by pushing, working too many hours, and just generally burning the candle at both ends. I was doing that also, when I got sick with the flu and never got better, and normally, I never caught colds or flu.
Do I blame myself for getting this? No, except when I have occasional dark nights of the soul. I had a laying on of hands by a grad of the Barbara Brennan School of Healing, during which I was told that I had chosen "the overcoming of illness by power of spirit alone" as my life's work, so she would not be allowed to heal me. I don't know it it's true, but it fits what my spiritual tradition teaches, and it would be just like me to bite off more than I could chew, and try something I was not spiritually advanced enough to handle. I am able to laugh about this now. It took a l-o-n-g time to get to where I could do that.