Being Defined by a Disease

One of the biggest struggles I face on a daily basis is one that I could not have and did not anticipate. I have found that, especially among young adults, that I am defined solely by my health complications. Having moved to a new place right after being diagnosed with Celiac and then RA I did not have a close knit group of friends and I have found it extremely difficult to build many meaningful friendships with people my own age simply because of my health issues; this is something that has really come to bother me. Perhaps it's from introductions when I first meet someone; the inevitable question I have come to dread is, hands down, "so what do you do?" I have debated for almost two years now how to properly answer that question. The answer doesn't seem terribly complicated: "due to some serious health problems I am on disability", but for some reason this response is a huge obstacle a lot of people can't seem to get past.

I have tossed around a number of theories around as to why exactly this phenomenon occurs. One theory that seems to fit is that people who have never experienced serious medical problems cannot relate. It's fair to say that at twenty five I have had to experience things that people twice my age have not and will not have to experience. Some experiences are hard for people to look past, especially when they cannot relate. Though I cannot blame them, it is an extremely frustrating life experience.

It sounds like the ending to a sappy Hollywood movie, or a cliché, but being sick has made me look at the world differently. It has made me understand what is truly important in life and what isn't. That view of the world is usually reserved for those at the end of their life or those who have faced what seemed to be the end of their life. Again, it sounds like a cliché but it's absolutely true! Taking this into account, sometimes I have a hard time relating to those who do not appreciate and understand the truly important things and people in life.

Understanding why I have a hard time trying to meet new people simply because I am defined by a disease doesn't make it any less frustrating. Sometimes I want to respond to people and say, "I am NOT just a Celiac patient, or an RA patient...I am an actual person who is interested in books, music, movies, politics and life itself," though I really doubt that would have any affect.

Another one of my theories, not just with meeting new people but with members of my own family, is people thinking I am just making up all of my complications. This is especially true for people whose health problems aren't outwardly obvious. When I have a flare of my pancreatitis or am accidentally glutenized (yes, I am making up words) it's not something you can see. If I had a dime for every person who has said to me "well you don't look sick," I wouldn’t be relying on Social Security! I am always tempted to respond, "I guess it's a good thing my disability isn't based on appearances!" I do not know the perfect way to respond to people who do not believe that I have serious health issues except to say that I do everything in my power to remove myself from situations in which I am surrounded by people who not only disrespect me but who disrespect my diseases.

Unfortunately, there is nothing that can be done with these types of people. The people who don't care, or try to care, about the strictness of a Celiac's gluten free diet, are sadly and unfortunately stubborn and hard headed. They're convinced we are all a bunch of hypochondriacs with doctors who love nothing more than to support pharmaceutical companies by writing an endless number of prescriptions. I have family members who have seen my joints during RA flares and still choose to believe I am making it up. As much as I would like to smack them upside the head until they get it, it's not worth the resulting assault charge. And I am not sure they do real gluten free food in prison! :) As hurtful as it is to especially have certain family members not acknowledge the seriousness of my health, the reality is that I cannot change their mind or their actions.

I often ask doctors and people I meet who have serious health problems how to respond to those who question my health problems or treat me like I have the plague; so far, everyone I have asked has given me pretty much one of two answers. One: People just don't know how to relate so they'll ask you how you're feeling to be polite then move on. And two: Some people just don't get it and you can't force someone to understand. Neither answer is very satisfying...nor do I know who to ask to get a better answer.

I would be lying if I told you it was easy to let things go when you know you are being unfairly judged. It's not easy to do, and sometimes it really gets to me and makes me incredibly mad. I have found it helps to tell myself anyone who judges me or shies away from me isn't worth my time anyway. My beagle Barclay helps too, because when I don't feel good he senses it and won't let me out of his sight. I don't think I will ever find an answer because I don't think one exists. Being in this position, the only thing you can really do is rely on those who know that genetic diseases are not contagious!