Like it or not, disability is irrevocably tied to the medical community. I’d like to take some space over the next few posts to explore how disability and medicine collide. For today, I’d like to start by challenging the role of doctors as experts.
Don’t get me wrong; I am not anti-doctor. Like most people, I have had some excellent doctors, and I have had some pretty terrible ones as well. Mostly I am against the way that all doctors are seen as experts, and the emphasis placed on having a label for what is wrong with you.
When you notice that something is wrong or different with your body, you go to the doctor. The doctor listens to you describe what is going on, and then attempts to verify what you have told them in some concrete way. This may mean that they draw blood, send you for an x-ray, look at various body parts, or any number of other tests that they could choose to perform. Then, they compare the results to what they know about the body. Are the numbers too high or too low? Do your organs look the way they are supposed to? Are there lumps growing where there shouldn’t be? Each answer points them in a direction to look for what might be going on. Eventually, if you are lucky, the things you are telling them and the things that they test will line up to match with a state where they know what is going on. The doctor will have come to a diagnosis, which also tells them what usually helps to fix the problem to the best knowledge that medicine has. Again, if you are lucky, there is a treatment that fixes the problem, and you go back on your merry way.
Just take an ear infection as an example. You notice that your ear is hurting a lot, so you go to the doctor and tell them that you ear hurts. The doctor looks in your ear and sees that it is red and swollen. The doctor tells you that you have an ear infection and prescribes antibiotics. When the antibiotics are done, hopefully you’ll be good as new. In the end, all the label says is that enough other people have had the same thing happen to them, that now we know what it looks like and when it happens, we know the things that usually help or make it worse.
Where we start to run into problems is when what is happening with your body doesn’t match up to anything the doctors know about. If the things you are experiencing in your body don’t match up to what the doctors can explain or measure, things become a lot more difficult. I have been told many stories of people who have been told by their doctors that they cannot possibly experience what they are describing to the doctor. I am sure there are countless other people out there who have gone through the same thing. When doctors say those things, they are completely ignoring a person’s own experience of being in their body. It is incredibly frustrating to know that something is very wrong in your body, but to not have anyone believe you. There are many stories of people who have been convinced that they have mental disorders because doctors cannot identify what is going on with their bodies. There are diagnoses in the DSM which can be used to label these people as being mentally rather than physically ill.
The problem is that medicine is a science, and while we are constantly discovering more about how our bodies work, we are far from knowing all the answers. What is today’s unknown mystery illness is tomorrow’s cancer, cystic fibrosis, or ear infection. The problem comes from seeing medicine as an absolute, rather than a continuing to evolve craft. Just because we don’t understand or can’t see what is going on doesn’t mean that it isn’t happening. While it can be incredibly frustrating to hear that no one is quite sure what is going on or how to help it, but we are going to do everything that we can to figure it out. I would take hearing that any day over being told that I don’t even know what is going on with my own body, or that I am mentally ill because something is physically wrong with me that doctors can’t identify (although mental and physical illness can sometimes be linked, of course). The first is at least affirming of people’s own experiences of living in their bodies. It makes the science the problem rather than the person.
The other big problem with diagnoses is the value that society places on being able to have one. The weight of having a diagnosis extends far beyond the doctor’s office. Having a name for what is wrong often is what makes an illness legitimate. If someone is tired and in pain all the time, then there are many things that could be wrong with them. Perhaps they aren’t sleeping enough, perhaps they are depressed, perhaps they just need to buck up and get with the program. When that same person is diagnosed with an illness based on those symptoms, suddenly their experience is legitimate because there is a name for it. Suddenly insurance companies are willing to cover treatments and procedures, because there is clearly a need for them. Suddenly, if you can’t work, there are options for going on disability, again because there is a label attached to what is going on with your body. If you ask for supports or assistance there are far fewer questions asked. Having a name for what is going on opens up many many doors. Doors that remain closed for many people who need access to the same benefits that people with a label can have. Again we tell people that if we can’t explain what is wrong with them then they aren’t worth of support or acknowledgement.
There are no easy answers. Doctors are looked upon as experts in white coats, even when it is easy to see that they are far from having all the answers. As long as we continue to look at people outside of ourselves as the experts for the things that we experience inside of ourselves, and continue to accept their version of events as worth more than our own because of their education and status, we will continue to punish people for experiencing things that science isn’t able to explain yet.