IG Living Blog

Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 8. January 2015

Staying Positive with Chronic Illness

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?


Add comment

Before submitting your comment, please review the IG Living privacy policy.

If you prefer to submit your comment privately, please email Abbie Cornett ACornett@IGLiving.com