Having a chronic illness is pretty difficult and becomes even more so when you add in a social element to the whole situation. Whether those of us who suffer with chronic disease like it or not, sometimes we require special accommodations. I know that I, myself, really struggled with this at first, and still do to a certain extent. Furthermore, sometimes the behavior of those with chronic illness may come across as socially unacceptable or rude. Let me explain this one through use of an example.
With my ulcerative colitis, sometimes my normal day to day abilities are hampered. More specifically, when I have to use the bathroom, it’s not always a light-hearted affair. More often than not, when I need to make a trip to the bathroom, not only do I feel an urgency to go (think trapped in highway traffic for an hour before a rest stop kind of urgency) as well as some pretty intense pain. Needless to say, when I have to go to the bathroom, it becomes priority number one. Also, a quite annoying symptom of ulcerative colitis that I have experienced is that sometimes the pain and urgency become so great that my body will sometimes decide it cannot hold it anymore. So now when we sum up all those little “pleasantries”, this leaves a nice little combination of pain, urgency, and anxiety. Let me also point out that these urges to go to the bathroom (like with anyone else) can happen at any time. I will be the first to admit that I become socially inept when such a situation occurs out in public, no matter who I’m talking to or where I am. Many times this has left me appearing rude and insensitive as I have had to excuse myself when the person I was talking to was midsentence/story. I also start to focus inwardly, getting tunnel vision, with the only thing on my mind being that I need to get to the bathroom, and I need to get there now. I can remember being involved in conversations where I have absolutely zero idea of what was being discussed due to this tunnel vision. Socially acceptable? I think not! It doesn’t even end there, as mood swings often happen as well due to the anxiety. Overall, it just isn’t a good situation.
Like I said, all these things from an outward point of view can easily be seen as rude. Many conclusions can be drawn about me if you didn’t know what was going on, whether people thought I was weird, rude, unacceptable, or just awkward. This actually caused me to become more awkward and terrified of social situations. I mean, what better way to avoid all of that than to just avoid social situations altogether?! This was probably the worst thing I could’ve done!
Eventually, one day I was somewhat cornered at work when my boss had asked me why I never ate pizza at the staff meetings. He was curious as to whether it was a gluten thing, or a healthy eating thing. He was genuinely curious and caring so I told him and my other co-workers about my ulcerative colitis. To my surprise, they were all very supportive. I think they were even relieved to understand what was going on with me. But without me opening up to them, they never would have known and just assumed I was a careless, lazy worker who always took bathroom breaks and wouldn’t eat their pizza.
I had such great relief and success by opening up to them that I began to take this approach in my life outside of work. It felt so relieving to explain to people that I was sick. It was even crazier to see that most, if not all, people were very understanding. They even shared stories about their family members or friends who had a similar disease and how they cope with it. I no longer felt like an outcast or unreachable. It helped me to move passed my own outcast behavior and was no longer afraid to talk to people and make friends.
The moral of the story is, there is nothing to be ashamed of with recognizing and being open about your disease. It’s understandable that some diseases may be a little embarrassing at first. But truthfully, if they are chronic, they are not going away, and thus, it is much easier to live with if you accept and recognize them. Trust me, I know. Ulcerative colitis is embarrassing, or at least was at first. I used to have to run to the bathroom at least 20 times a day (and sometimes still do). I couldn’t pass gas for well over a year without a fear that it wasn’t just gas. It’s just the nature of the disease. But I’ve learned that my disease was only as embarrassing as I made it. Once I wasn’t embarrassed about it anymore, neither were the people I was talking to. It’s okay to talk about it. People generally want to understand what is going on with you, especially if they care about you. Most people will also want to help in any way they can, but they can only help if they know what is going on.
Now for the tricky part. It is possible to talk TOO much about it. You don’t want to go around like a vegan or a Crossfitter, telling everyone and anyone you have a disease. “I have a chronic disease,” is an absolutely unacceptable response to “How are you today?” I guess the real key is not being ashamed of your disease. If it happens to come up, it comes up. You don’t have to hide it. Yet, you also don’t want to be that broken record that only talks about your disease. This is why I refer to it as the Social Paradox. Like everything else, there is a happy medium where this exists and I have found that for me that is simply not being embarrassed about my disease and when the topic comes up, if the people I am talking to are interested, I will share what information I feel is appropriate at the time.
Now this also took a little practice, as you can ask my parents, who told me on countless times I was revealing a little too much information. Whether that was because I was saying too much or they just weren’t ready to hear it is up for debate, but that is something you also have to keep in mind with loved ones.
So to wrap up this novel of a post, just remember one thing. Don’t be ashamed or embarrassed of your disease, people are more open than you think once they understand what is going on with you.