When dealing with chronic illnesses as opposed to acute illness the rules change. When you are acutely ill you get sick, get diagnosed, get treatment, and then get better. With chronic conditions a person often does not get better. They learn to manage their symptoms and to cope. That’s not to say there aren’t treatments that can help with symptoms, but often there is no cure.
Because of the lack of a cure there is a fundamental misunderstanding about the benefits of an accurate diagnoses.
I’ve personally experienced this in the form of doctors telling me that we could do tests and look for a cause but it’s unlikely we can solve the problem. Therefore, in their minds at least, there is no need to go looking for the specific causes. This response is incredibly disheartening. It’s as if the doctor is telling me that I’m irreparably broken and that I’m unworthy of even knowing the name of what’s wrong with me. Not only is this idea emotionally hurtful but it also delays or prevents proper treatments that might be helpful.
Here’s the thing that some doctors (and some healthy people) don’t seem to understand: A new diagnoses doesn’t mean a new condition. I have the condition either way. A new diagnoses is only helpful. It opens the door for specific treatments for symptoms but it also gives me warning about potential future problems. It enables me to find appropriate treatments much much faster.
For instance, I have a connective tissue disorder. Most often my injuries are dislocation related. Often something will slip out and then back in very quickly. By the time I get to a doctor the joint has usually already slipped back into place. As a result most basic examinations and imaging will not show anything out of the ordinary. In order to find the types of tissue damage I usually have it would take some advanced imaging and normally my pain level doesn’t justify that. It also often takes a long time to get those types of imaging tests scheduled.
Now that I know I have a connective tissue disorder I know how to get appropriate treatment relatively quickly. I know that I can often skip the ER since they will often just do an X-ray to be sure nothing’s broken and then maybe offer me pain meds (which I try to avoid anyway). Instead I’m much better off seeing a sports rehab doctor or a physical therapist. Even massage is usually a better option than the ER (and ends up costing the same or less than an ER visit).
Another example is when I was diagnosed with POTS. POTS is a dysfunction of the autonomic nervous system, which controls basically everything you don’t have to think about. One of the most prominent symptoms of POTS is lightheadedness and in some cases fainting. Before being diagnosed I only knew that I was often light headed, but I didn’t know what was causing it. Now I know that it is a result of blood pooling in my lower extremities. Now I can take specific actions to help it to be less severe. I can wear compression socks for example, or I can squeeze my leg muscles for a few seconds before standing. Neither of those things cures me but they do help my symptoms to be less severe.
There’s also pharmaceuticals that help keep my blood from pooling that have helped me. In addition to those treatments I now have an exercise program tailor made to combat the blood pooling problem. Those treatments only became available to me once I knew what the problem was, once I had an accurate diagnosis.
If you are struggling to find the correct diagnosis keep at it. It’s well worth it to figure out what is going on and how best to treat it. If your doctor isn’t interested in helping you find that diagnosis then either talk to them about why it is important to you or find another doctor. You are worthy of finding the cause of your symptoms. You are worthy of finding help to treat those symptoms. You are worthy.
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