It’s one thing to know that you have an illness, but do you know about the illness? I’m not talking about how to get rid of the illness, I’m talking about the illness/disease itself.
On a personal note, I was diagnosed with an auto-immune disease at the age of 12 and unfortunately I didn’t know the ramifications of the disease process. I knew my grandfather had the same disease and that scared the hell out of me…but I knew one thing, it wasn’t going to kill me.
It wasn’t until I was in my late twenties that I began to take an interest in my illness. Not a morbid kind of curiosity, but a “I want to know more about this ” out of innocence curiosity. I’ve been blessed with the best doctors in the world. They are not only knowledgeable and compassionate, they are always on the lookout for the newest and greatest treatments and most importantly; they are always willing to dialogue with me.
I’ve used my medical team to understand the biology of the disease and how the treatments interact with the illness. I follow up on website related to my illness and through those avenues I receive articles and more opportunities to learn.
I first had to not be afraid of how the disease would impact my life. I had to push through the fear about the obstacles and know that I’d find the internal resources to get over the hurdles. I also had to find medical providers who would share with me what they knew beyond the treatments so that I could reduce my anxiety about what would come next or what the long term effects of treatment would be.
Finally, I have to keep in the curiosity mode because, as you know, science and technology are changing every day and that’s important for restoring hope. I hope you become curious about your illness beyond the catastrophe side of the disease and believe it or not the mind-body connection will respond.