Ah, the social stigmas of chronic illness. If it isn’t enough that one has been burdened by an illness, in addition, one has to manage the boorish comments of others, one’s own self-doubt and the legitimately embarrassing situations presented by ulcerative colitis. The fact of the matter is that those of us with ulcerative colitis truly have no harder road than someone in a wheelchair, someone with a massive scar or even a big nose or big ears. Society has its norms and it has to deal with those who are different somehow.
Sometimes ulcerative colitis does have a social stigma. What have been my personal experiences? Really, mine have come in three major areas and they hit each key region: work, friends and family. Unfortunately, the creation of this “stigma” is often based on erroneous conclusions as I suppose most “wrong thinking” is.
As a result of my ulcerative colitis condition, I did, for a while, miss a lot of work. Further, I worked partial days. This had two impacts, people needed to cover for me and I was viewed as sickly. When a person has to do your work, I assure you they attach a tag to you that you don’t like. Further, there is an element of disrespect when others think you are sickly. It’s almost like the survival of the fittest.
The same problems occurred with respect to family get-togethers. I would often not feel up to going and anyone with a family knows that it takes no effort to estrange them; they take things personally at the drop of a hat.
Finally, and in the same vein, friends feel slighted when you don’t see them as often as you once did.
So what does one do? Frankly, the only person who knows the truth is the ulcerative colitis sufferer and it is, I believe, up to them to advise everyone about what is really going on. By the way, I think it is the toughest for young kids. They have such a difficult time battling the disease and then have to deal with other kids who, we all know, can be mean.
What I ultimately did was to call three separate meetings: at work, with the family and with several of my key friends. At these meetings I explained my condition. I was surprised that many people had not heard I had an illness. Rather, they just thought I was lazy or “anti-social.” Further, I told people that I was doing everything I could to get better so that I could socialize and work, but that I needed their help and understanding.
Following my “meetings,” things changed in many ways. I know for some people this seems impossible. They think that they could no more do what I did than the man in the moon. But the only way to deal with a problem is to go to the heart of it.
As I said, things turned around dramatically. Were there people who clung to ill feelings? Of course. However, it was interesting that over time they became the ones with social issues, not me.
Along with honesty about the illness, I never took what people said personally. I knew they were reacting to conditions and outcomes, not to me as a person. Further, I tried to keep a smile on my face and to give people every reason to like me; I think it worked.
Is there a social stigma to ulcerative colitis? Yes, there is a social stigma. However, it is, I believe, a reaction to the inconveniences and social messages, right or wrong, that the disease sends. Most of the time, if people are informed of the circumstances, if they know the truth, most people will at least attempt to make the right decisions and look at the ulcerative colitis sufferer in the correct light.