Thoughts On Living With An Illness...Opening Up, Shutting Out, and Coping Methods

I have always thought of myself as a very open individual when it comes to my health condition. There are people that I will share my story with in all the detail they want, and then there are people I might not share as much. I have no problem talking about my health, and I do not have a problem with others talking about it to their family/friends, but for some reason there are people in my life that ask how I'm doing just to ask (not really caring about the answer), so they can then go and talk to others about it, and at that point I shut down and don't reveal anymore to them. As do I shut down the ones that ask me how I am and then turn around and say I'm faking it because "I don't look sick".

I tend to shut out the "worry warts" (only when it comes to my illness...not all together). This is different from those that are genuinely concerned. The "worry warts" literally freak out with nearly anything I do (whether it's school related, work, leisure time, or when considering having kids). They see my disease rather than seeing me. I consider myself to be a relatively independant person and when one starts to worry about me to the point that it interferes with my life and try to make decisions for me, it annoys me. I was diagnosed over 10 years ago...I know my body better than anyone else out there and it just rubs me the wrong way when when someone repeatedly tells me I shouldn't do something because it might be too dangerous for someone with my health condition. Sure, I might get run-down easily, but that does not mean I want to stop LIVING. I know my body well enough that if I really don't feel good on a given day, I might choose to stay home and rest. That doesn't mean that I don't ever want to do anything...I just don't want to do anything that day. :)

Then there are those that are genuinely concerned. They see me for me and they know how to separate me from my disease. They ask questions, but do not judge the way I live my life, infact, they help me embrace it. They care about my health, but they know that I'm determined to live. I love things that most adults (and even kids) love. I love water slides and fast roller coasters. I love the rickety carnival rides that appear once a year at State or County Fairs. I love going to sporting events and concerts. I love the idea of sky diving, riding in a hot air balloon, or taking a helicopter ride in the mountains someday. The ones that are genuinely concerned know that these are just some of the things I enjoy and they know that these are activities that many people enjoy (healthy or sick)!

The "worry warts" would not see it that way. They'd tell me I need to be more careful. Sure, that may be true to an extent. Perhaps I wouldn't be able to stay out as long as someone that is healthy. I have to know when to quit. But the "worry warts" want to be the ones to tell me to quit before I even start. It's almost like they want the control. It can be dificult to deal with at times.

I think my illness has shaped the person I've become, and I see it as a blessing rather than a "disease". Sure, I have bad days (who doesn't?), but when it comes to my condition, I embrace living with it. Do I hope for better treatment? You bet! Do I hope for a cure? Absolutely!! Living with an auto-immune disease and the experiences I had as a child, teenager and now as an adult gave me great insight as to what I wanted to do with my life. I wanted to work in healthcare and help infants, children and teens who are chronically/terminally ill. My original goal was Medical School. However, that was one thing that was not physically possible for me. So, I went into Dietetics/Nutrition. I want kids (and their parents) to know that they have someone who understands their situation and WANTS to help them. I empathize with their frustration, hurt, various coping methods as well as their hopes, faith in proper treatment and the list goes on. I want to be able to share that in my profession and I really feel that this is God's Will for me.

Well, this has gotten longer than I thought it would. Thanks for checking in! Can't believe this Sunday is already Palm Sunday and the beginning of Holy Week leading into Easter and the day after Easter is when I find out if I get that Dietetic Internship I so badly want.

God's Blessings to everyone! I'll write again soon!

Amanda