I was recently sitting outside with a neighbor, discussing life. I was explaining how RA and fibromyalgia have put a major damper on my life. Last year at this time I was making a killer salary, doing what I wanted to do, when I wanted to do it. When you lose the ability to normal things like write or hold a cup of coffee, it really sucks. When you realize that you spent an ungodly amount of money in college learning how to write computer code, then lose the ability to type, it's gut wrenching. When you love to cook, but can no longer stand up long enough to do it, it's devastating.
I didn't get a moment to explain my situation to this neighbor. Instead - she felt the need to berate me for feeling down and useless. She had breast cancer and to quote her, "I was puking every morning from chemo and I was still waiting tables every night. I had cancer and I was alone. Suck it up and go back to work."
I left the table as soon as the opportunity allowed. All I could think about the rest of the night was how lucky she was to be cancer-free. How I wish I had cancer, because then I'd at least know that at some point, whether I survived or died, there was an end to it. Because then it would seem bad enough that people would care. People would offer their well-wishes instead of telling me I'm lazy and useless. But that's not the way it is with me. I'm 24 and I have 4 life-long, non-curable, supposedly 'manageable' diseases. To put it simply - I am mentally and physically fucked. What horrible things I am putting in my body to manage these? Anti-cancer meds, steroids and pain-killers! In the last 7 years I have deteriorated considerably. At times my Wii Fit game has informed me that I am 70 years old. And I'm supposed to be the happy-go-lucky person I was a decade ago? One of the things that really bothers me is that I get sicker when I try to get better. I spent the last almost 2 years trying to better my life. Exercising, changing my entire lifestyle to eat healthier, quit smoking, stopped drinking, and what happened to me? I got worse. I didn't have RA and fibromyalgia 2 years ago, but I do now. I've often said I want to go back to my carb-eating, fat-ass days where I ate anything I wanted - because I wasn't physically sick then.
I know that there are other people dealing with much worse than me, and I understand that. And I'm not writing this because I need pity. I don't want pity. I just want understanding. I want my friends and family to spend just a few minutes of their time to read about what I'm going through. To really understand that this is real. To realize that a phone call or text to ask me how I'm doing could probably making my friggin' day.
Here are links to some great, short reading about the 4 illnesses I have.
Rheumatoid Arthritis: RA Guy's 60 Second Guide to RA
Bipolar Disorder: http://www.helpguide.org/mental/bipolar_disorder_family_friends_support.htm