By Abbie Cornett
As a patient advocate and a patient with common variable immunodeficiency (CVID), I am frequently asked by patients who are having difficulty coping with their illness how I cope with mine and how I stay positive. This is always a difficult question for me. Being positive isn’t something just that happens; it is something I have to work on.
So many of the people I speak with are so much sicker than I am now. Since I was diagnosed and started intravenous immune globulin (IVIG) therapy, I am able to work full time and have a great job that accommodates me. So, the first thing I tell patients is that everyone’s journey is different. I can tell them my story and what I do to stay positive, but I stress that everyone has to find their own way.
When I was first diagnosed, I was so happy to have a name for what was wrong with me and that there was a treatment for it, that I didn’t think much beyond that point. It wasn’t until a few months later that the finality of my diagnosis set in. Before, there was always the hope that one day I would be well and that I would be free of doctors, medicine and hospitals. With my diagnosis came the reality that I had a chronic illness — a disease that there was no cure for, only treatment.
Knowing that, my diagnosis seemed more like a curse. I felt limited. I started thinking of all the things I couldn’t do. I worried that I wouldn’t find a job that could accommodate me. I worried I wouldn’t be able to do the things I had dreamed of doing, like traveling the world. I had to schedule travel around my infusions. I started to dread my infusions because of the side effects, and the time spent getting treatment affected time with my children. I began to forget how I felt before I was diagnosed.
Before my diagnosis, when I was sick, all I wanted was to be well so I could raise my children, work and live life. After, I was mad and depressed, because while I could do those things, I couldn’t do them on my terms and not the way other people did them. But, I slowly realized these feeling were part of what it meant to have a chronic illness, and that I had to find a way to deal with them the same way I had to deal with my disease. I learned that while life may not have turned out exactly the way I wanted, I could still have a good life. Part of this meant accepting that I wasn’t Wonder Woman. There would be good days and bad; I found little ways to adapt.
One of the hardest things for me was being afraid I wouldn’t be able to be the kind of mother I want to be - that my children would think of me as sick. I worried about not having the energy they needed. My husband is the one who suggested that instead of being down because I was too tired and sick to cook the day of my infusion, that we make it movie and takeout night. This has been a great way for my kids to accept that I am not feeling well and still enjoy our time together.
My dreams of travel have not changed, but I have had to accept that there are certain places I will probably never go, and when I do go, it can’t be for long periods. But this doesn’t mean I am homebound. I have found that with planning, most places are still possible to visit. And, since my diagnosis, I have traveled to many places, including outside of the United States.
The way I stay positive is to remind myself daily how fortunate I am. I am able to work full time, raise my family and do most of the things in life I want to. Everyone has to find what makes them feel positive in life. For me, finding happiness has been a process of learning to accept my limitations and to still find a way to follow my dreams.
How do you stay positive with your chronic illness?