Being a nurse was a vital part of how I defined myself. I had a lot of people telling me I’d never amount to anything when I was in high school. There were times when I was homeless, drunk/drugged, beaten, and generally behind my peers in all social aspects. While everyone else was off getting a degree or learning a trade, I was taking a train with a borrowed twenty bucks in my pocket to marry a man I’d never dated with the main goal of escaping the hell of my life. Yes, those were choices I made, but mostly they were corners that I was painted into by the adults in my life. Becoming a nurse was me taking back control of my future. It was me establishing that I would no longer need any other person to keep me safe and secure. I could do it myself, and I could do it well. It was the proudest moment of my young adult life.
The author graduating Nursing School in '97
That was ripped out from under me by this disease, and I was pretty angry about it. Again, something external had waylaid my plans. Again, something beyond my control was dictating my happiness. I could no longer claim independence. Or, so it felt at the time.
There are plenty of disabled people out there who wax poetic about how their illness has made them a better person, or a family member goes on and on about how they never gave up, or some claim they won’t let their disease define them, etc. There are posters and banners and websites and charities and whatever else out there that make you feel that not only do you have a disease that has stolen your functionality, but you are also a loser for being so angry or sad about it.
To put it politely, screw those people. I mean, good for them, but they are not you. I also firmly believe that they didn’t roll out of bed the day after their diagnosis farting rainbows. I lost friends because they didn’t understand (or care to understand) what I was experiencing and why I might need time to adjust. They just thought I was negative, and they were right. I was, but that’s okay. It was a healthy, normal reaction to my situation.
1. Be patient with your support team. Instead of saying to them, “I’m sorry I can’t…”, say “Thank you for…”. Find a safe outlet for your anger. Journals, therapy, twitter, whatever. Just remember it isn't the fault of those that love you.
2. If you read my first paragraph, you’ll see that I was still trying to function as before. I gave up my job knowing it was impossible, but I was still trying to pretend everything else was normal. Admitting that I had new limits and needs was a large step in losing some of my anger.
3. Celebrate the small things in a big way. Redefine success. This disease can steal away the feelings of independence and productivity. Acknowledge that and then take back the control. Doing your hair is a success. Sitting outside and letting the sun warm you is a success. Making it to a doctor’s appointment is not only a success, but probably earned you a nap!