Don’t hate me for being one of “those people” but I’m going to jump on the “The Fault In Our Stars” bandwagon here. I know that many people have fallen in love with this book/movie and that even if they can’t relate as well with the characters, they can live through their stories and appreciate it. After all, who doesn’t love a good “sick person” story every now and then? And there certainly has been an increasing number of them coming out lately (personally, I want to watch Red Band Society). They make good stories after all. As long as the average person can put it down or turn it off at the end of the day and return to normal daily life.
For me, however, these stories tend to really hit home. There are so many messages in it that the chronic illness community has been trying to espouse for years now:
- We are NOT inspirations for the simple fact that we EXIST. This is the basic function of life. Existing. You might as well find a virus inspirational. After all, they exist without even being alive. Now that’s talent! Seriously though, just because life happened to give me a different challenge than it gave you, and just because you can’t imagine yourself with my particular challenge, does NOT mean that I am inspirational for dealing with it.
- We ARE excluded. We are looked at strangely. We are avoided. We are talked around. We are talked about. We are so many things that you THINK we don’t know about. I know why the elderly couple in the waiting room keeps glancing at the strange 20- something young adult and whispering in hushed tones. I know why I’m given the shocked looks when the nurse calls my name and I actually stand up and follow her. I know that my co-workers talk behind my back about all my call-offs and doctor appointments. I know what that worried glance means when I’m sitting or laying on the floor in a public place. As if you’ll actually be required to step in and do something. And how distinctly uncomfortable my pain is to you.
- Are we worth it? This is a thought that often runs through our minds every day, multiple times a day. “Great, he has this sick pathetic person as a mate. He must hate what I have become. I am such a burden.” How can we not think that? Doctor appointments aren’t fun. Would you want to go to them weekly? We don’t. We certainly worry that our friends and families don’t either. I go through phases where I just want to hole up and hide. Don’t look at me. I’m shameful. I want to be sick in private. It’s my own personal shame that others shouldn’t be subjected to.
- There is pain. There is always pain. I may look at you and say I am feeling fine and dandy and that today is a perfect day…but… that is only because I am referencing it to another day that wasn’t as fine or dandy. A day that was hell and that makes this day look like a warm cheery bonfire. My scales are different from another person’s. If you lived in pain every day, you would start rating a normal 2-3 as a 0 or 1. After all this is the baseline. This is the normal. Also, this goes back to #3. If we are feeling particularly insecure about our illness, we will hide how it affects us.
- There is fear. There is always fear. Chronic illnesses are uncharted territories. There is no easy guaranteed course that our disease will take. There is no promises that once A happens, it will lead to B, then C is next…etc. All there is, is a big huge UNKNOWN. And that is freaking terrifying. Many people try to comfort us by saying crap like “well I could get hit by a bus any day” or “We’re all dying”. It. Is. Not. The. Same. I’m facing dying by a lingering possibly progressive, painful disease. I’ll take the bus next life-time.
There is so much involved in being sick and the longer you’re sick, the more there is to deal with. Living with a chronic illness has a huge learning curve and there is a lot to get used to. Often times you are faced with the choice of not telling anyone that you are sick, in order to be treated normally, or telling people and then living with the stigma of “being sick”. That’s not an easy decision to make.