Dear Ms. Doctor,
I doubt you'll remember me. I came into your office sometime in January about tendinitis in my wrist, and I've been thinking about the interaction we had ever since. I hope you take this letter in the spirit in which it is written, which isn't out of anger or hostility at all, but a sincere desire for better understanding.
The day I saw you, I wrote on my medical history intake form, under the question about ongoing illnesses, "I've had Chronic Fatigue Syndrome for six years." You read my form, and then looked at me and said, "So you seem really healthy." I was shocked, and I didn't know what to say. I had only come to see you about my wrist and didn't feel like making a speech, so I just said, "Yeah..." It was an expedient lie that I wish I hadn't made.
The truth is, I'm one of millions of people in this country who have Chronic Fatigue Syndrome. Despite its pejorative name, this is a very serious illness. The first five years or so, I was actually wildly healthy for a person with CFS; I was about 50% functional, able to work part-time and have an active social life. I spent the other half my time in bed feeling like I had a terrible flu. Then my condition deteriorated, partly because I pushed myself too hard (moving, grad school), and for the past several months I have been almost completely bedridden. I am able to rally every so often, like when I came to see you about my wrist, but then I pay for it later.
The purpose of this letter isn't to blame you or to complain, it's to raise awareness about CFS. CFS is twice as common as multiple sclerosis, and more common in women than HIV. The etiology is unknown, but most scientists believe it is caused by a virus, possibly the retrovirus XMRV, but this research is still fairly new. Researchers at the University of Miami and the Medical and Dental University of New Jersey have both found biomarkers for CFS in recent years. Even so, most doctors aren't educated about it, or even more insidiously, believe that it is a psychological condition. I assure you it is not! For more information about CFS (also known as Chronic Fatigue Immune Deficiency Syndrome and myalgic encephalomyelitis) you can go to the CFIDS Association of America's website, http://www.cfids.org/ . This is a great review of the state of CFS research, statistics, and professional resources.
Over the last few months, I kept thinking of how I didn't respond to your statement with the sad and uncomfortable truth, and the effect that will have on your next CFS patient. There isn't a lot I can do about my condition, but raising awareness and promoting correct information is the first step towards a cure. Thank you for taking the time to read this letter and think about CFS.
Sincerely,
I doubt you'll remember me. I came into your office sometime in January about tendinitis in my wrist, and I've been thinking about the interaction we had ever since. I hope you take this letter in the spirit in which it is written, which isn't out of anger or hostility at all, but a sincere desire for better understanding.
The day I saw you, I wrote on my medical history intake form, under the question about ongoing illnesses, "I've had Chronic Fatigue Syndrome for six years." You read my form, and then looked at me and said, "So you seem really healthy." I was shocked, and I didn't know what to say. I had only come to see you about my wrist and didn't feel like making a speech, so I just said, "Yeah..." It was an expedient lie that I wish I hadn't made.
The truth is, I'm one of millions of people in this country who have Chronic Fatigue Syndrome. Despite its pejorative name, this is a very serious illness. The first five years or so, I was actually wildly healthy for a person with CFS; I was about 50% functional, able to work part-time and have an active social life. I spent the other half my time in bed feeling like I had a terrible flu. Then my condition deteriorated, partly because I pushed myself too hard (moving, grad school), and for the past several months I have been almost completely bedridden. I am able to rally every so often, like when I came to see you about my wrist, but then I pay for it later.
The purpose of this letter isn't to blame you or to complain, it's to raise awareness about CFS. CFS is twice as common as multiple sclerosis, and more common in women than HIV. The etiology is unknown, but most scientists believe it is caused by a virus, possibly the retrovirus XMRV, but this research is still fairly new. Researchers at the University of Miami and the Medical and Dental University of New Jersey have both found biomarkers for CFS in recent years. Even so, most doctors aren't educated about it, or even more insidiously, believe that it is a psychological condition. I assure you it is not! For more information about CFS (also known as Chronic Fatigue Immune Deficiency Syndrome and myalgic encephalomyelitis) you can go to the CFIDS Association of America's website, http://www.cfids.org/ . This is a great review of the state of CFS research, statistics, and professional resources.
Over the last few months, I kept thinking of how I didn't respond to your statement with the sad and uncomfortable truth, and the effect that will have on your next CFS patient. There isn't a lot I can do about my condition, but raising awareness and promoting correct information is the first step towards a cure. Thank you for taking the time to read this letter and think about CFS.
Sincerely,
Lee Davis
Hi, Lee!
ReplyDeleteThanks so much for visiting my blog and taking the time to comment.
This letter is fabulous!! I have wanted to write letters like this before and never seem to get around to it - this is just perfect. I may borrow some of it the next time I run into a non-believer.
You mentioned on my blog wanting to find the online CFS community but without the angry ranters. My feelings also! The best way to become part of this community is just what you are doing - leave comments on blogs that seem to fit your own attitudes, then people will begin to visit your blog. Despite some of what you have seen so far, there is a warm, supportive CFS community online. Welcome!
Sue
I hope that your calmness and sincerity make an impression on this doctor. This is a fucking great letter.
ReplyDelete<3
Aw, thanks Zem!
ReplyDeleteUpdate! I got a measured and calmly-worded letter BACK from my doctor. She says she does take CFS seriously, but was just focusing on my wrist, and invited me to come see her again if I want to. I'm really touched that she took the time to write me back. So, that's cool, right?
ReplyDelete