I read this and I understand the frustration of a “patient” and their caregivers when there are no answers. Evy and I never met a hematologist that didn’t have a theory about what was her problem. I used to joke that “we’ve seen EIGHT hematologists and got NINE opinions, but ZERO solutions.” Wasn’t trying to be funny! I tried to keep the records but unfortunately I focused on “the numbers”. I should have been capturing her journey with all the hurt and frustrations. Sigh! I guess there would have been no purpose since as reported in this article; it doesn’t do any good. Or help anyone struggling with the same issues. Sigh! Wonder if anyone ever published her journey as a case report.
Crazy Old Ferd
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Another way of putting it is that functional disorders tend to be popularly regarded as — well — fake. Chronic fatigue has been nicknamed “yuppie flu” for a reason. If doctors can’t find a problem, the reasoning goes, then there probably isn’t one. And the line between a “functional disorder” and the simply psychosomatic is thin. In her book on treating people with such disorders, It’s All In Your Head, neurologist Suzanne O’Sullivan notes that IBS is considered by some “a disorder of perception.” Sufferers might be “overly observant of every internal sensation and change in their bowel motions.” By perceiving their symptoms, they conjure them into being. “They are reacting to symptoms that others might dismiss, and those reactions serve to heighten the symptoms and awareness of them,” she writes.
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To other people, this line of argument might sound very familiar, something almost worse than simply not being believed. It’s the tone of a doctor who starts to ask you questions you already recognize as the diagnostic criteria for depression or anxiety. The doctor isn’t dismissive. He (or she) believes you feel all the things you feel. You just don’t understand those feelings. And as you insist on your version of events, you feel increasingly conscious of how much more convincing the doctor’s story is. The weird truth is that I still find the psychosomatic explanation of my own troubles vastly more satisfying than what my illness turned out to be. It provides a bad guy: me.
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Now in Evy’s case, we KNOW something real was going on and it eventually killed her. If she didn’t have unexplainable “disappering” platelets, then maybe she too would have been written off as “psychosomatic”.
I have tremendous sympathy for these so called “psychosomatics”, because there is a HUGE gap in humanity’s knowledge and compassion.
Sigh!
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Reinke Faces Life 