This is a bit hard to write, but I think others with illness, especially invisible illnesses might find comfort and company in my words. Yet, I know by putting them out there its a bit counter productive for me, making me a bit more vunerable than I prefer to be, maybe some in my life will feel like I am ‘guilting’ them, that isn’t my intention.
I feel a great many people, especially those who have invisible illnesses, go to great lengths to hide their pain, not to appear whiney, not to become burdenous, and not to let their pain or illness become the focus of their friendships and relationships. Our illnesses already take up way too much of our own lives. Even on bad days, we say we are fine, on really bad days we might say “oh, I don’t feel great today, I think I will say in”, but we rarely say “Oh, I feel like I really might die today, just from the pain, and I don’t even know if I can get myself grapes and a glass of water from the kitchen”. When we have pain that might send a grown healthy man to bed we might smile, get dressed and think, “oh good, today I can handle enough to do the shopping, and run to the post office, and maybe if I can handle it, make myself a healthy smoothy” because after all, its less pain than yesterday.
So who’s fault is it when someone says “Well you don’t look sick” or “You don’t act sick” or even one step further “are you sure you are sick and your doctors aren’t just trying to get rich off of you?”. Can we blame those well meaning friends and aquaintences? I recently had someone who I consider a good friend tell me that maybe if I stopped going to the doctors so often I wouldn’t feel so sick. This is a person that calls me for every problem they have, no matter how small, and I always try to help them, no matter how much pain I am in. This is a person I have taken care of when I was in a lot of pain and sick, because they were sick, and they are not used to being sick and I am. I was stunned. Without medical care I know I would be dead by now. Years ago I was using a cane, which I no longer have to use because of medication. I had at one time lost the use of my hands and could no longer paint, which is my career. Of course my reaction was that this person, who is suppose to love me, didn’t want me to have a life as fulfilling as possible, wanted me to have even more pain, did not care if I breathed, did not care if I could paint, or walk. Did not care if I lived. Why would someone say something like that to me.
Then it hit me, there is only one reason. It wasn’t that that person wished me ill. It was that he didn’t really believe I was sick. That is because I never give up. I show up to work if I can possibly walk. If there is a funeral or a wedding, or a childs first birthday, or a baby shower, or a friend having a breakdown, I will show up for my friends if I can take a breath and take a step, without moaning outloud in pain. Maybe that gives people the wrong idea about me. Maybe that is why people will tell me I don’t look sick when I am honest and tell them I just can’t go out to dinner because I am having a not great week.
I know I am not alone. I know there are hundreds of thousands of people out there, who hide their illnesses every day, in little and huge ways. I also know its hard we we do such a good job at hiding it, that we fail to get the support we need from those we care about.
I partially started this page so I would have a place to share my pain freely, and yet I hardly do. It still feels too much like complaining. I encourage everyone who has an invisible illness to have at least a few friends they can talk to, tell the truth to. Or at least a blog where they can spill it all out, maybe for no one at all to ever read.