The Search --- For BADD Year 2
You know you have reached rock bottom on the search for medical answers, the day you start hoping that something will come back positive on a test and you do not care what. I probably hit that point three or four years ago. I have spent most of my life searching for answers about my physical health. I developed chronic pain young enough that I do not remember what it feels like to be pain free. When I was sixteen, I was given the diagnosis of fibromyalgia. I tried treatment after treatment (both traditional western medicine and various holistic approaches), nothing worked. I saw a fibro specialist. I stopped after the day he told me it was better for me to spend all my time in bed than to use a cane or wheelchair to get around, but that he had no more ideas to help me. The most help I had was from an osteopathic doctor (DO) who told me to do what I needed to do to live my life with as little pain as possible. He prescribed a wheelchair for long distances. Unfortunately, I had to stop seeing him several years ago. Since then, the doctors I have seen have decided that I do not have fibromyalgia, but they do not know what I have.
The two hardest parts of not having a diagnosis are the feeling like you do not have control over what happens and the looks you get from doctors. Without a diagnosis, it is very easy to write someone off as someone with mental health problems. Luckily for me, I have always had therapists, psychiatrists, and other mental health professionals who have recognized that while, yes, I have anxiety problems, they are not the entire picture. That said, as my current psychiatrist says, doctors are often willing to ignore what a psychiatrist or therapist says if it does not fit with the doctor’s bias or assumption.
Being told for years that everything must be in your head takes its toll. Eventually you begin to believe it a bit yourself. That turns into a cycle that cannot go anywhere good physically or mentally. I managed to break that cycle this year after a conversation with a friend where I realized it did not matter what caused my health problems, necessarily. What matters is that they’re there. At this point, because my mental health is under control, and I am under control, we are looking into my physical health for options.
Meanwhile, I have learned how to cope on my own. I currently do not have any sort of real pain management. I use a wheelchair for long distances to cut down on pain and because if I stand for very long, I fall. I use forearm crutches for shorter distances to cut down on some pain and for balance and so I can get around when my hips/legs do funky things. My primary care doctor supports me in this.
I have also started to accept that I may not ever get a real answer. I may always be a collection of symptoms. I am far more interested in some level of additional pain control and ways to keep my joints better behaved than I have currently. Using a wheelchair bothers me far less than spending all my time in bed doing nothing. Honestly, I can live with my day-to-day levels of pain. I have lived with pain at this level for years. It is the days when things are extra bad that get to me.
Ultimately, I am who I am. I do not need answers to live my life. I need tools for it. And for now I have the tools for most days. I'd like the tools for the others, too.
Also, my BADD post in my disability blog: A Tale of Two Lifts