It’s been a rough week, with a crazy fibromyalgia flare that doesn’t want to leave, daily migraines and a weather pattern that is not helping my recovery in any way. For several days, if I was a cell phone, my battery was dead. It is only starting to pick up some charge now, but once that charge is depleted, I am out. I wish I could switch my body to Nokia – charge up to 100% quickly and retain charge for a longer time!
Everybody has been very kind to me during this period, which I am very grateful for; but at the same time, I also felt quite starkly the disbelief that surrounds a young person when they get sick! People seem much more likely to believe that you are stiff and achy, have no energy, you feel like a train ran over you, all day everyday, and conversations require effort, if you are 65 years old. In a sense, I can see why, because it is much more common to feel that way as you get older. But fibromyalgia can feel like that to a 25-year-old too! There’s nothing they can do about their bodies developing a chronic illness, and they’re not lying about how sick that might make them feel!
In fact, young people can be a lot sicker than I am – St. Jude’s is a hospital devoted to treating young people with cancer, which objectively is a lot more serious than fibromyalgia. So it is a little blind-sighted to act as if all young people’s lives are meant for “working hard all day and partying harder all night.”
Saying things like “you need to get over it” or “learn to deal with it” doesn’t help the situation either. I know when I heard these, they were meant to motivate me to not let my illness stop me, since I am still so young. But to say such things is really insulting the person living with the illness day in and day out. What I think a lot of people don’t realize is that we are already dealing with it – all the time! I don’t know that it is possible to remain sane with chronic pain unless you have found a coping mechanism! So statements that show a lack of understanding of the tribulations of the condition can come across as quite rude to the person fighting pain and still at work, listening to that.
While part of the problem here is the age of the patient, the invisibility of the illness is definitely the other half. Nobody would seek to question if a young person walked into an HR office and asked for accommodations because they had a broken leg. But if somebody did that with fibromyalgia, they may have to deal with some raised brows. Invisibility is not only physical. It also matters how well-known the disease is and how much awareness there is about it. Cancer may be an invisible illness on a person, but no HR would question a request for accommodations from a young employee with cancer. A fibromyalgia diagnosis, on the other hand, would get you more raised brows. This is why I have a lot of respect for people who raise more awareness about invisible illnesses and it’s impact on people. Shout out to my fellow bloggers who do that here!
All in all, I can understand why a young person’s illness can make people uncomfortable. It is a reminder of the fragility of health, and maybe even of life itself. And nobody wants to be reminded of that! I understand that most people are not trying to be rude or demeaning. They may just not know how to act or what to say in awkward situations, and cannot handle them well. As such, I do try to treat those people with compassion.
However, if you’re a non-suffering reader who can relate to this article, I hope you can take away some ideas for what not to say and how not to act towards your suffering acquaintance. Your effort at understanding our plight will be duly appreciated.