I Have Leprosy

Written by Nicole H. Holmes

Everyone has their own experience, good and bad, living with Leprosy (also called Hansen's Disease). This is mine.
I feel like my life will never begin. It's like a movie stuck replaying the same scene over and over again. The movie is about a young woman diagnosed with a disease. All of the doctors and nurses say not to worry it is curable. They say, "You will only take medication for about a year to two years, but you will still live a normal life." That was five years ago and I am still popping pills in my mouth every morning. My life is no longer normal at least not according to my definition. I was once able to use my fingers to type 60 words per minute and feet to walk long distances. Now I type with two pencils not my fingers and drag my left foot when I walk. Despite all of this I can't help hoping and praying that the scene will some day change. That young woman will get a chance to write the script the way she intended.
I was diagnosed with Hansen's Disease when I was eighteen in 1997 and began treatment shortly after. I was still in college at the time, but was still able to graduate magna cum laude and get married even with all the additiional stresses. I am now twenty-four and continue to take medication. I have had both negative and positive experiences living with this disease, as is expected. The most profound experience was to have a primary care physician not give me the respect I deserved, of shaking my hand and introducing himself on my initial visit to him. He chose instead, to speak to me from inside the doorway. This was because he knew I had Hansen's Disease. I now know how truly blessed I am to have a supportive family and open-minded friends who love me, perhaps even more, because of my struggles and my determination to keep fighting on. I have learned that as a person with Hansen's Disease it is important to never leave your doctor's office without having your questions answered. The key to getting well is in our hands. You may not be able to control what is going on inside your body, but the more knowledge you have about Hansen's Disease is the more empowered you begin to feel. If for some reason your doctor does not have an answer then get it yourself. I found that sometimes the best prevention is self-education.