Most people would immediately answer “Never!” when asked if they have been cruel to an ill person, but the truth is that we have probably all done so at one time or another and we didn’t even know it. I’ve been ill for almost twelve years and it was only when I ended up on the receiving end, did I even stop to think about all the times I may have said and done something inadvertently cruel to other ill people.
Most chronic illnesses are invisible. If you look at my pic, or even look at me, you can’t tell that I am ill. This is not just true for ME sufferers as the same goes for people with Alzheimer’s, Cancer, Fibromyalgia, Lupus and dozens upon dozens of other illnesses. This may seem like a good thing, but it actually makes life harder for people with an invisible illness or disability because they not only have to deal with the symptoms of their illness but with the way people treat them.
I’ll give you an example; say you were standing on a crowded train and you saw a heavily pregnant woman get on the train, but no-one got up to give that woman a seat. So, feeling outraged you quite forcefully asked the nearest seated person if they could get up and allow the pregnant woman to sit. Seems like the correct thing to do, right? After all you are helping the pregnant woman. Well, that person seated was me. I didn’t even notice the pregnant woman who got on, because I was riddled with pain that was causing severe nausea. I had returned to work after seven years and while I was at work I had experienced a total relapse. I actually got up for the pregnant lady, but only because I was so confused, I didn’t even know what I was doing. Luckily I did not have to stand for too long, but the fact that I did caused me extra pain in my legs, back and arms for the rest of the week. But what if I had said “No”? If you asked someone who was well-dressed, healthy looking, with immaculate make-up, who was obviously coming back from a corporate job to give up their seat for an elderly or pregnant person and they said “Sorry I’m ill” and even gave you the name of an illness that you had not heard of, would you believe them?
It’s easy to say “Who cares what others think” or “You should’ve just stayed seated” but I know so many people who have problems dealing with others in social settings as years of illness have broken down their ability to even communicate effectively. Also, especially with an illness like ME where stressful situations can cause the adrenal gland to go into overdrive causing further and more serious symptoms, sufferers are hard-wired to take the path of least resistance. I have a friend who is forced to take a walking stick with her when she travels to and from work just to avoid the kinds of situations I described.
Before we all start wallowing in guilt over all the people we may have inadvertently hurt, it is worth remembering that it is not our fault. We subconsciously take others at face value and make up our minds about them within seconds. Unless we see a physical sign of disability or illness, we are not going to consider it. Also, we have in mind that sick people look sick; they’re pale and thin, or use a walking stick or wheelchair, right? If they aren’t or don’t, how ill can they really be?
The most we can do is to not take people at face value and understand that not all illnesses are visible. I once saw a young woman vomiting outside the train station exit. It was rush hour, but people were just walking past her. It was a week or two before Christmas, a time when many people are out at parties and social gatherings and I guess people just assumed that she had been drinking too much alcohol. I went to her and asked her if she needed any help, and I waited with her until she was able to phone someone to come and get her. She had not been drinking, and when her husband arrived, he said he was taking her straight to the hospital. She may have had appendicitis, or food poisoning or anything, but no-one helped her.
I think us ill people are to blame too. We don’t talk about our illness and the way it affects us enough. It took me over ten years to be able to talk about my experiences because, like most people, I don’t want to be ill. I don’t want to be ‘negative’, or to admit that I’m ill, which is often perceived as a weakness. I don’t want to have to talk about symptoms or how much my life sucks. The sad fact is that the only time society wants to hear about illness is when it is a positive story about how someone beat their illness and carried on as usual. Unfortunately, for most ill people, life is not like that. So it is hard, but we have to try and educate people.
I’m grateful for all comments on this topic as it is not an easy one for me to write about.