by Abbie Cornett
How do you explain that you have a rare disease? Before I was diagnosed with common variable immunodeficiency (CVID), I played the revolving door game with the intensive care unit. I was healthy and seemingly normal for a few weeks, then I would catch the flavor of the day and crash. This was something that neither I nor my doctors could explain. It severely affected my chosen career. I was forced to use all my vacation and sick leave, and was without pay for long periods of time.
Once I was diagnosed, I immediately began regular intravenous immune globulin (IVIG) infusions that keep me from getting sick all the time. Yet, even though I had been diagnosed, I hid my condition. I didn't want pity. Then, in 2004, I was elected to the Nebraska state legislature. It was at that time that my immunologist convinced me to become active as a patient advocate. He made me realize how fortunate I was.
I still struggle with admitting I am sick. For me, even writing this was difficult. I don't enjoy the sidelong glances when I explain I have an immune deficiency. The only real comparison I can give is a reference to the 1970s movie, "The Boy in the Plastic Bubble," but with access to modern medicine. I have friends and family who have known me for years, and who still don't understand my illness. When they ask me for the umpteenth time what exactly is wrong with me, I take a deep breath and remind myself that their questions are a sign that they care. Where before I would hide it, now I take the time to try and explain. Sometimes, I have to repeat it over and over to the same people. Everyone "understands" cancer and chemo, or diabetes and insulin. No one understands the side effects of receiving an infusion of IVIG once a month. There aren't enough of us with CVID for many people to have heard of it.
When I explain I have to receive monthly infusions, people act like it's my choice. I'm asked: "If you feel that bad afterward, why do you keep doing it?" I want to say because I have children who I want to see grow up. Without monthly infusions, I don't know if I would. I don't know if I would get to watch them graduate from high school and college, to be married, or to one day hold my grandchildren. When I get asked: "Aren't you used to it by now?" I want to ask them if they had the flu every month for the rest of their life if they think they would get used to the headache, muscle aches and other even less-pleasant side effects.
But, when I think about saying these things, I stop myself and remember how lucky I am. I have people in my life who care enough to ask. Many people go through life without people caring about them or trying to understand. So far, I don't have any serious co-diagnoses like so many patients do. I get my "go juice" every four weeks and live a normal life. If you met me today, you wouldn't even know I was sick, and to be honest, I still don't routinely admit it (even to myself).