One of the themes that is shared between my family's experience of ME/CFS and our experience of autism is a need to change the way that we have related to the medical system in the past in order to find and receive meaningful help. When I was much younger, I used medical care the way that most people still do today- I saw the doctor as the expert and I would go to them when I thought I had a problem to see if I actually did and to find out what to do about it. They had special training and charged a very significant amount of money on the basis that their input was very valuable and could not be found elsewhere. This made sense to me, so I would dutifully follow whatever advice I was given. I didn't think to question it or do my own research because how could I, someone with no medical training, ever understand what they were talking about? Later I would discover the discipline of Medical Anthropology (and even later, that of Medical Sociology) and come to see my earlier beliefs in an entirely different light.
When we took Roo in to begin the evaluation process when he was 3 it became clear to me very quickly that these people did not have the information that we needed. They were engaged in an elaborate semantic exercise regarding exactly what to call "what he has" without focusing on the realities of those symptoms. I saw right through the diagnosis dance that all the show was a smoke screen for the fact that they really had no idea what had actually happened to my child and what exactly needed to be done to help him. They ended up recommending Occupational Therapy and Speech Therapy, which is what they would have done pretty much regardless of the diagnosis. Seeing as he had intense sensory processing difficulties and no language at all at this time this hardly seemed like rocket science.
Once the facade of expertise was cracked it fell away pretty quickly. They couldn't tel me *why* my child had such disordered sensory processing capabilities or *why* he had no language. He did not have these issues in his first year before he regressed, so why did he have them now? WHAT HAPPENED TO HIM? Before we even had him evaluated, our family doctor had suggested that he may have food allergies. She had no suggestion of what they might be and we did not want to subject Roo to painful testing if not necessary. We put him on the gluten-free, casein-free diet honestly as a wild guess and within one week he had said 30 words and his regression had halted. Once we began the speech and OT these therapies had an almost imperceptible benefit if they had any at all. So, from the very beginning, it was clear that if we were going to find things that were going to really help Roo we would need to take an active role in seeking those things out ourselves. The experts did not have the answers.
This experience has been mirrored in my own health. While the experts debate whether or not CFS (Chronic Fatigue Syndrome) is real, or simply the delusional claims of mentally ill patients, I've done my own research into what my symptoms may mean and what I can do to address them. What I've found in both this context and in the case of autism is that other affected people are generally the best source of information because we are the most motivated to move beyond the stifling political overtones of these disorders and get to the point where real, open-minded research can lead to real results. Affected people and their families *know* that these disorders are real and get no benefit from the endless repetition of tired dogma. What is especially ironic about this is that all it takes is asking the question "what could these symptoms mean if we view the body as a biological entity?". It has taken me a long time to realize that in the context of conventional medicine this is actually a revolutionary concept.
I was excited when I found this TED talk about just this subject- redefining the role of patients in their own treatment. The speaker says that patients are the most under-utilized resource in health care today and ends with the mantra "let patients help!". I would go one step further and say it's not patients who should be allowed to help doctors, but rather doctors who should help patients.
