Hysteria Lane

Last night I wondered if I'd ever be able to write a new blog again. First I had my second appointment with the specialist, who decided I have somatization, and then one of my best friends admitted he thinks I have it as well. As my aunt says, this is nothing new, I've been here before. But the fact that those who truly believe my case are dwindling is still a bit alarming, especially given the medical evidence of a cerebellum disorder. When I received a reply from my regular neurologist it all came together -- he had written in my file that some of my worsening may be an emotional response from starting a new path.

My neurologist didn't want to tell me this gut reaction of his, and neither did the specialist or my best friend, J.R. After my appointment and before the phone call with J.R., my roommate and I finished watching Sex and the City 2, where Carrie kisses Aiden on foreign soil and is contemplating whether or not to tell Mr. Big. The girls act as little voices on Carrie's shoulder, speaking aloud the debate that is going back and forth in her mind. "To tell him would only distress him." "It was only a kiss." But a bigger voice, the one she uttered herself, said that she and Big never keep secrets and that she wasn't going to start now. Mr. Big was hurt but came around, and Carrie realized that she needed to trust that her relationship was not turning into that of an "old, married couple," and that even if it did, that would be okay.

While Mr. Big didn't yell at Carrie, probably due to his natural elusiveness and her long distance proclamation, I did yell first at the specialist and then at J.R. "It's something to think about," J.R. said, and I assured him (while still yelling), that's it's something I think about every day. Whenever my legs won't work I wonder if I am creating this drama for myself, or if bad karma had come back to bite me because I used to love to pour over medical journals filled with gruesome pictures when I was a kid. But then those who have or do live with me remind me that seeing me day to day assures them that none of this is self-created. Those who see me periodically -- like he specialist who knows nothing about me aside from my complaints, and J.R. who I store up energy for in order to put on my best face -- don't see my day to day struggle that has everything to do with bodily responses and nothing to do with a sour or melancholy mood.

What's interesting about somatization is that it is merely a 21st Century term for hysteria. Much more women than men are diagnosed with it, and because it is defined as something the patient creates but ultimately has no control over, it's an infallible assumption. My aunt, who was equally outraged at the appointment, asked the specialist why we are supposed to go on faith when medicine is built on scientific proof. Somatization is in many cases another word for "I don't know," without the feeling of helplessness that doctors can feel with those words. Somatization really means, "We haven't figured it out yet," because if you look back through history, many now well-known disorders and illnesses were first said to be based on stress, simply because the medical profession didn't yet have answers. But somatization, like hysteria, is a dangerous term, treating the patient as a self-sabotager who back in the day would be forced to lie down in bed for months, see no one, and to live solely on warm milk. Sounds kooky, doesn't it? Now doctors take the opposite approach. Somatization means that you need to do more, be more, and just suck it up and move on.

Back to Carrie and Mr. Big, is honesty the best policy? Would it have been better if these men had not shared their perceptions with me? Absolutely not. If I did have somatization I would cast them from my life and insist that they were crazy. But because I don't, I can allow myself to see things through their eyes, to accept them for their human reactions, and to work with them to create an even better cooperative approach to my diagnosis, prognosis, and care. I've had many conditions that were first considered to be psychosomatic and that have since then been diagnosed medically, and I know this current condition is no different. Furthermore, while the specialist read my file and assumed that my case was all psychosomatic -- with a smirk on his face while he said that he's seen this many times before -- my neurologist and my best friend just want the best for me (the latter thinking all I need to cure me is a boyfriend). They just want answers, as do I, and I'll keep writing my story no matter what people think.