Five things that changed my life as a patient, caregiver, or health activist. For better or worse. That's the challenge for today (see last line, below).
I am not much of a health activist, in my opinion, and yet I have worked to change my own life and sometimes to help others change theirs.
The first thing to come to mind in that respect was the book Mad in America, by Robert Whitaker. The first page of this book told me of a World Health Organization study that discovered that so-called schizophrenics fare far better in third-world countries than they do in the western world. The main factor that they found different in the treatment of these patients was that in these poor countries they did not have access to anti-psychotics. The schizophrenics in poor countries actually got better, whereas in the U.S., for example, we have come to think of them as permanently ill. I had long held that belief, too, that schizophrenia is incurable, only manageable. When I learned that this was not true, I began to delve further into the use of other drugs on patients called "mentally ill", including, especially, antidepressants. Ever since, I have campaigned against the lies, the misunderstandings, the so-called "conventional wisdom"about psych drugs. In at least one case, a woman who was using antidepressants, I have gotten through, while in many others I have encountered anger, rage, disbelief, unwillingness to consider the possibility that doctors don't always know what they are doing. It may be that this one book opened my mind to looking at the world a little differently, and with a great deal more cynicism and watchfulness.
My experience with arthritis may be another case. I first started having difficulty with my knees in my 30s. I went to the medical clinic and was told I had damaged something, they did not know how or what, but that physical therapy could help. The first time I entered the physical therapy department, which was relegated to the basement, I was amazed. I had no idea that these people actually existed, not in a conscious way, anyway. I remember thinking, with some joy, that these were the health professionals who do the real work, the hard work, and they are mostly unsung. I have continued to have that opinion since, and I have seen many physical therapists as part of my knee replacement therapy. I cannot say enough about these life-changing professionals. This is on-the-ground, real help. How often do we get that?
I suffered with migraines most of my life. My mother took me to an allergist as well as to other doctors, hoping to find a cause, but none was found. When I was young - seven is when they started, as I recall - the headaches would get so bad that I would throw up, then fall asleep, and when I woke I would feel better. As I got older the migraines changed, and as an older adult they sometimes lasted for several days, which was truly horrifying. I felt at times that I would welcome a bullet to the head. Several years ago I happened upon Oliver Sacks' book, Migraine. In this book I learned about the many kinds of migraines (I never had the visual effects but some people only get those, and no headache, but it's all part of the same thing), and the many different ways people are treated. Sacks discovered that when one treatment fixed the headache then the patient tended to have a problem elsewhere. It was as if it was just shoved to another part of the body. Ultimately, after exploring all of the ways migraines are treated (not to mention the interesting history of the condition), Sacks finally recommended taking two aspirins and lying down in a dark room. Just let the migraine have its way, don't fight it. This book certainly changed my mind about my headaches.
As a young adult I was depressive, to say the least. I fell into depressions frequently, sometimes suicidal. My stepmother recommended a book - A Guide to Rational Living, by Albert Ellis and others. The book suggests that we can control how we feel by controlling how we think. The idea seemed absurd to me at the time and my buddies and I had a lot of laughs about the concept. But still, I dipped into it. I read it. And it drew me in. Gradually it won me over. The basic idea behind what is now called "cognitive behavioral therapy" was born here, although Ellis gave it another name. The book is still in print, in an updated version (although much of the 70s language is still there, outdated but readable enough), which suggests that I was not the only one to be affected by it. This book, along with a therapy group I belonged to for one year (for free!), taught me the tools I needed to counteract depression when it started up. I did not immediately eliminate depression from my life but over time the incidents were fewer and fewer, and each time I knew what I had to do. I feel so sorry for those who have been told that they have no control over their depressions, that they must be on drugs all their lives. They are living half-lives, prisoners to the drug companies, when they could be as free as I am. This book and this group were life-changing for me. I believe strongly that we are much more powerful than many of us believe, that we do have the goods. We do not need to be victims. This point of view has colored the way I treat all health issues in my life. It is a major part of who I am now.
Years ago I worked with a "life coach" for a little while. I was trying to get other parts of my life in order. I told her that writing is important to me but I am not doing much with it. She found LiveJournal, the site where I could keep a journal online. Initially I used it to write spontaneously, just to write. But in time it became the place where I could pour out my feelings and thoughts, and thereby release them from inside me. It became a way for me to deal with issues in my life. Since then, I have always had some kind of journal (or "blog") and I write in them all the time. The act of writing about my feelings, both physical and emotional, has been immensely healing for me. In some cases, as with this journal, it is also a way to track how I have dealt with certain types of physical issues, to see if I am getting better. Writing this way has become a huge part of who I am.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J