Everyone preaches “Awareness”. You see all the facebook posts and hear all about the walks and charities. Awareness is a big thing for those who have a disease. But why? Why does it matter whether YOU have heard of MY disease? Especially a rare disease which only affects less than 200,000 in America.
Excellent question! Luckily I have an excellent answer!
When you are diagnosed with a disease, you expect the doctor to be able to tell you what it is and how to fix it. If it’s incurable than you expect them to at least treat it. The rarer the disease is, however, the less likely that you’ll get this. Patients with rare diseases end up knowing more about what is affecting them than what the doctors know. When this is the case, the patient gets very little validation. You see, that’s a key thing about awareness. The patient gets support, either through professional help (doctors, treatments…etc) or through emotional help (friends, family…etc).
There are no doctors within an hour radius who know what to do with me. It sometimes makes me feel like a hypochondriac, like my pain isn’t real. There are no commercials spouting out “EDS can have a detrimental affect on your daily activities…” There are no Facebook wild-fire posts that preach awareness. I have NEVER seen a marathon for EDS or any sort of charity geared towards research and a cure. With EDS, I am pretty much alone. My family and friends have never heard of it before the diagnosis. They don’t know how it impacts me. They can’t comprehend my limits. There is no way they could because they had never heard of my disease beforehand. Without the awareness, very few people know, and that makes me alone. I struggle alone.
Yes, there are support groups. These matter to me so much. They validate what I feel, they let me know what to expect, they are a support system. But these people live miles, states, countries away and are often only a support in a virtual way. They, however, are also sick. Even if they were close, I would not ask someone else with EDS to help me lift something heavy, or to come with me to the hospital, or to grab me something from the store….because while we can take care of each other to a point, we are each fighting our own battles and sometimes are not capable of being there for someone else.
With Ehlers Danlos, the greatest thing I wish for (aside from a cure) is understanding.