Last month I paid a visit to Connecticut to give a talk to a local NAMI group there. A hundred people – probably two-thirds of them family members – turned up to hear me speak.
My talk was about being a smart patient, which is the theme for my blogs at BipolarConnect.com and my website, as well as the central point of my book, “Living Well with Depression and Bipolar Disorder” (HarperCollins), which came out in October. My theme is as relevant to family members as it is to patients. All of us have to be smart.
In support of my thesis, I described what may have been the first study to link genes to behavior. My point was there was a lot more to bipolar than just bipolar, that there was a lot more to depression than just depression. We’re talking about a whole host of functions that are influenced by genes and biology and environment – fear, anger, memory, cognition, motivation, sleep, diet, temperament, neuron function, impulsivity, and on and on and on. By appreciating the complexities of our illness, I said, we learn to – in the words of the wise man – know thyself. And by knowing thyself, we become our own wise man.
I also provided a demonstration of why I consider depression and bipolar part of the same underlying phenomenon. Many people with so-called unipolar depression have depressions that behave quite a bit like bipolar, with some manic and cycling features. Conversely, many bipolar patients are depressed practically all the time. Failure to recognize the subtle shades of our illness can lead to treatments and therapies that do not match our true condition.
There are excellent books out there, I concluded, with titles such as “Depression for Dummies” and “Bipolar Disorder for Dummies,” but if we remain stuck at the dummies level, we are never going to learn to live well with our illness.
I wrapped up my 30-minute talk, then opened up the proceedings to questions from the audience. The first question came from a concerned middle-aged gentleman. “I have a 20-year-old son,” he said, “with bipolar disorder. He refuses to acknowledge his illness or take his meds. What should we do?”
Anxious eyes looked at me from every corner of the room. This was the question most of the people there desperately needed an answer to. I hesitated one brief second, then gave the man the only honest response: “I don’t know.”
I don’t know. Consider: I could have answered almost any question on the fine points of brain science, diagnosis, and treatment issues short of engaging in the practice of medicine. I’ve been researching and writing about my illness full-time for the past eight years. I’ve attended conferences, read medical journal articles, interviewed leading clinicians and researchers, and learned to appreciate the wisdom and insight of thousands of patients and loved ones.
In eight years, I’ve learned a lot. But I’ve also learned a lot about what I will probably never know. And I knew I had no answer to what had to be the hardest question in the world.
My failure to ease the concerns of this man – and the others in the room – pained me. I told the room how I facilitated a support group, and that it was virtually impossible for our group to attract and retain young people. I explained that teens and young adults desperately want to fit in and do the things their friends do. They don’t want to be told they’re different, not quite normal. They don’t want to hear that they may have to take meds the rest of their lives, especially ones that make them feel like fat stupid zombie eunuchs. They don’t want to be lectured to on how wise it is to go to bed at a reasonable hour while all their friends are partying.
I told them how my illness manifested in full measure in college and how I wound up dropping out and having to go through a number of lost years in my life. I told them how I was so deep in denial I that I didn’t seek help until age 49, time enough to have wrecked my life several times over.
Unfortunately, kids have to make their own mistakes, have to fall flat on their faces, often a number of times. Hopefully, they will eventually learn their lessons, while there is still something in their lives to salvage, before they have put their families through too much pain.
Never give up on your kid, was about all I could say. Never abandon hope. Your child is entitled to enjoy a full and productive and rewarding life. I can say this with credibility and great passion. I have bipolar, after all, yet – despite everything - I seem to be doing fine.
But I had no magic answer for that poor man or the others in the room. He was powerless and so was I. Against ignorance, even the gods cry out in vain. I didn’t know. I just didn’t know. Sometimes, I really hate this illness.
Published On: December 15, 2006
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