No one in my family knew what Common Variable Immune Deficiency was. Nobody even knew the name of it. It was always called, “That thing Diane has!” around the family dinner table. When I asked what it was, my dad always replied that he didn’t know, only that my aunt had it and she was always sick all the time with a cold or the flu.
He told me she had to get these treatments that made her feel terrible, and she struggled to work and raise a family. I didn’t know exactly what she suffered from, only that it sounded like a miserable way to live, and I hoped it wouldn’t happen to me.
Growing up, I was always a healthy kid. I never got sick. I went to school and worked full time with ease. I stayed up sometimes for days and I loved sports. I was the one who never caught the flu when it went around the neighborhood. Then without a moment’s notice, a few months after I turned twenty, my body shut down, seemingly out of nowhere. After being unable to work for a month, I went to the doctor and he said that I had some sort of mono-like illness.
There was a problem though: the symptoms should’ve passed long ago, and I was still ill. Another month passed by, and I was still feeling the full effect of whatever I had caught. I told the doctor that several of my family members, most recently my younger cousin, had passed away from complications of an immune disease. Immediately my blood was shipped off for testing. My friends told me that there was nothing wrong with me, but I had this knot in my stomach that wouldn’t go away. After months and months of blood testing, the results finally came back positive. They called it Common Variable Immune Deficiency Disorder. I felt they might as well have called it the end of my life.
I didn’t want to acknowledge that I was sick. My doctor couldn’t believe me when I told him I wanted to put off treatment. I was going to live in a dorm for the first time in the fall, and I didn’t want to be bothered with infusions. I just wanted to be a normal college girl. We made an agreement; if I called him more than three times during the semester, I would have to start receiving plasma infusions. But the minute I stepped into the dorms, it was like Sick City.
I missed a lot of classes simply because I couldn’t get out of bed and make it across campus in the morning. I had to drag myself up the stairs, and struggled to breathe while walking. When I went back for my check up in December, I had called eighteen times in the past three months. There had only been two weeks out of the entire semester I hadn’t been ill. I left school, partly because it was expensive and partly because I couldn’t keep attending with how sick I was. The first month of infusions were rough; it was like I had the flu, and the infusions were so painful I felt like I was being beaten with a bat. I took online classes and struggled to hold down a job. I never had any energy anymore, and I was discouraged. While my friends were landing degrees, gaining careers, getting married and having children, I seemed to be doing nothing but getting sicker. I wanted to be normal, but I realized that I could never be normal again. This thing was my life now, and I could do nothing but deal.
The biggest piece of advice that I can give to patients that have recently been diagnosed with a rare disease is acceptance. It is so hard, especially at a young age, to realize you have limitations. Everything you do has a consequence. You no longer have a massive amount of energy, but a small portion that you have to use sparingly. You don’t have the liberty to be like everyone else; your disease doesn’t permit that.. Your family members and friends aren’t going to understand what you’re going through, either. They can help you, and support you, but at the end of the day the only one who gets what it’s like to be sick is you. You have to do what’s best for yourself…and sometimes that’s the hardest thing to learn.