My Letter to the APA

As a CFS patient, I have the perennial, wearisome task of making my case that I am not crazy, Im sick. CFS is not a psychological disease, but an entirely physiological one. It is a disease that has walloped me every day since I first came down with what I thought was the flu on the second Monday of April, 1991. At first I thought I could ignore the symptoms and exercise them away. I was determined to remain the healthy, active person I had always been. I tried to hold down my full-time job as an administrative assistant, but I could do very little else. By the autumn of that first year I was totally exhausted. By winter I became bedridden.
Naturally, I sought medical advice from the professionals, the homeopaths and the quacks. It took seven medical doctors and 12 months before I got the diagnosis of Chronic Fatigue Syndrome.
You can imagine my indignation. I was absolutely certain that a disease with such a banal sounding name as Chronic Fatigue Syndrome would never hold me down. It did. Little did I know then that the same disease in Europe was dubbed Myalgic Encephalomyelitis, or M.E., (a name that demands a tip of the hat). CFS sounded like a complaint, not like a disease that would render a healthy body totally incapacitated for years. Also, the name never fit the symptoms. I am totally debilitated and struggle with dizziness, nausea, incapacitating headaches, sensitivity to light and noise, and most of all I am exhausted without cure. I spend, on average 80-90% of any given day lying down. I have left my house only 5 times this year.
I write this personal history so that you might fully understand how CFS is not only a physically devastating disease, but also an emotionally and mentally draining disease. CFS patients are sick and in addition to coping with disabling symptoms, they are also forced to clarify their illness by an often unsympathetic medical community. The continued misunderstanding that surrounds CFS forces patients to forever get out of bed to demand respect. It should be enough to be sick advocacy should not be so mandatory. Additionally, my own story is not at all special. It is a very typical narrative for CFS patients throughout the U.S.
This new Complex Somatic Symptom Disorder (CSSD) category that the APA is proposing What is the profit? As it stands right now, CFS fits into the very broad CSSD definition. In one stroke the APA will effectively make the lives of CFS patients even more difficult than they are today.
Dont do that.
The definition of CSSD is illogical. The APA seems to suggest that if a patient is very ill for an extended period of time, and does not respond to treatment, then the patient probably has a mental disorder. At the very least, the patient now has CSSD. Then what?
With a CFS diagnosis, patients have gained a measure (a very small measure) of recognition. And it is widely accepted that a physical malady is at the root cause of CFS. The idea that long-term unexplained symptoms can pigeonhole a patient into a psychiatric category is simply wrong.
With CFS you have a group of very sane and at one time, vital people who were struck down often in the prime of their lives by a mysterious, physical disease. It has been theorized that CFS could be the result of a viral infection, an immune disorder, a neurological malady but in any case, you are talking about a physical problem thats CFS. By acknowledging this simple fact, doctors, researchers and even the patients can focus on an ultimate cure.
If I must endure CFS, allow me to endure it exclusively. If I become both a CFS and CSSD patient, countless problems arise. The APA has just made it more difficult for me to be effectively treated and possibly cured. The CSSD label adds confusion, not clarity to an already misunderstood disease like CFS.
One of many crazy aspects of CFS that separates it from all other diseases is that the patient is forced to explain themselves, repeatedly. We lie in bed, unable to get up and too often are accused of not being willing enough to make ourselves well. It is my hope that in my lifetime I will see a picture of CFS, and that I will one day understand whats broken. And I emphatically believe that when the doctors and researchers also know the cause of CFS, their first comments will be, Wow, Ill bet that does hurt.
Dont create a category that makes already sick people have to explain themselves one more time. The APA must acknowledge that there is a possibility that modern medicine has yet to fully develop the diagnostic and treatment options for a number of physical diseases, CFS among them. Just because the patient cant point to the problem, it doesnt mean that its all in their head.

Comments

This just makes me want to cry. Today I cannot stand up without my heart rate shooting through the roof and fatigue flooding my limbs. Does this mean I'm crazy? Apparently. Great letter, thanks for sharing it with us.
 
Thank YOU, Nermalina, Jewel and Nico! I've been in bed for days and not checked back until now. Many thanks for the feedback. -Liz
 

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