A friend of mine posted this quote this week, and it provoked a lot of controversy. ”Refuse to be ill. Never tell people you are ill; never own it to yourself. Illness is one of those things which a man should resist on principle at the onset.” - Edward G. Bulwer-Lytton
While I think the quote leaves a lot open to interpretation, what I took away from it was to not have the mindset of an ill person. I say this as someone who’s been sick for ten years. Once I was diagnosed (quite a bit later), I felt defeated physically, and that was when the disease really took over. I acted like an ill person, and I let people know I was ill. It was an excuse to get out of things I didn’t want to do, and I let it hold me back in areas where I could possibly have pushed myself.
And now, three years after the diagnosis, I am out of bed and overwhelmed. Illness is an isolating thing, both physically and emotionally. Until I started becoming more active (not without great effort), I didn’t realize how isolated I had become. I used to be an outgoing person, and now, I found myself getting stressed out at meeting friends of my parents.
People who don’t have a chronic issue, especially one that doesn’t display obvious symptoms, don’t understand those who do. I have two other friends who are sick, one with the same illness and one with a similar illness, and I know they have found this to be true as well. For about three weeks, most people will feel sorry for you. They will offer (usually really bad) unsolicited medical advice, ask you how you’re doing, but then they seem to forget. I think it’s hard for them to wrap their minds around illness being a standard set of being.
That’s where I got off. While it was the standard for me, it was not normal. Nothing about illness is normal. Sick bodies are part of what come with living in a sick world.
After two years, I got tired of living in bed (although I’m not tired of my sweatpants yet!!). It took me about another year to work up to a semi-normal energy level. I know that I’m not ever going to function properly, but that’s not me admitting defeat, like so many think. Instead, I’m looking at the situation from new eyes—not the eyes of a sick person and not the eyes of a healthy person. They’re the eyes of someone who will live at any cost.
“The more serious the illness, the more important it is for you to fight back, mobilizing all your resources—spiritual, emotional, intellectual, physical.”-Norman Cousins