Ever since my diagnosis of sarcoidosis, I have seen others with the same disease refer to themselves as “snarky sarkies”. I certainly get the joke. Many people with sarcoidosis are in tremendous pain, can’t breath with ease and are loaded up with either steroids or chemo drugs or both. Who wouldn’t be tempted to be snarky in that situation, right? While I get the fact that this is meant to be light hearted, I fully admit that I don’t personally care for the joke. I am neither snarky or a sarkie. Instead, I am a person trying to live a dignified life with a chronic illness, who doesn’t want to use my disease or its treatment as an excuse to be unhappy or justified in being obnoxious toward my fellow man.
While we all are capable of having a snarky moment now and again, I do not believe self identifying as someone who is snarky because I have sarcoidosis is a healthy outlook and I simply won’t do it. In fact, I have worked very hard since my diagnosis, to be as positive as I can be about my prognosis and my life. I live in a chronic situation now and I have to learn to accept this reality. I have found the closer that I get to doing it with some modicum of grace, the better I actually feel, so I don’t like being thought of or referred to as snarky because I am not a snarky person. I never have been so why should I allow this disease to turn me into one?
I am also by no means a “sarkie”. I hate being called a “sarkie”. I think being called this is actually demeaning to anyone with this disease. I prefer to think of myself as a person who happens to have sarcoidosis. I think the moment I label myself, the disease defines me and I do not want to give it that kind of control over who I am. I am a person before I am a disease and I am a person before I am any kind of label for that disease. In addition, I think using terms like “sarkie” degrades our efforts to educate and spread appropriate and meaningful information about our disease. It’s a short cut and not a very effective one as far as I’m concerned because it is often said with sarcasm, especially when it is preceded by the word “snarky”. I want people to hear the word sarcoidosis. I want them to hear it, ask what it means and get educated about what I have. I want to be able to present the information in a dignified way so that people understand that I am a person with a life threatening chronic condition and I cannot do that if I am playing a game with my words. I want people to take what I say about my disease seriously and who is going to do that when I label myself a “snarky sarkie.”