by Annaben Kazemi
For most people with an immunodeficiency, it’s a relief to finally obtain a specific diagnosis. Having battled misdiagnosis, unrelenting symptoms and people who don’t believe there is an illness present, a diagnosis comes as a reassurance or validation. Yet, while there may be a certain satisfaction to finally labeling the disease, almost everyone has to learn to cope with their diagnosis.
When someone has just been diagnosed, they might experience a variety of responses. Some people feel vulnerable, confused and worried about their health and their future. Others feel sad or disappointed in their bodies. For some, the situation seems unfair, causing them to feel angry at themselves and those they love. Everyone’s reaction is different, and whether you are the patient, a family member or a primary caregiver, all of these feelings are normal at the start of the coping process.
I remember when my daughter was diagnosed at a very young age with an immune deficiency. I felt a range of emotions: I was relieved to know there was a reason she was so sick; I felt guilty that I might have “passed” the condition on to her; I was hopeful there would be a way to help her; I had practical worries about how she would cope with the intravenous immune globulin (IVIG) needle and sitting for a six-hour infusion; and I was concerned the impact of the diagnosis on her future.
The first step in my coping process was education. I told myself: “Knowledge is power!” The more I learned about her condition, the more I felt in control and the less frightening it was. I read everything I could. I asked lots of questions, and after working with my daughter’s practitioners and understanding further about her illness, I began to become more skillful at monitoring and managing her illness.
Those early days of my daughter’s diagnosis seem like a distant blur of hectic activity and anxiety. Now, my daughter is a teenager and managing the illness has become second nature to her, with the steps involved seeming like just another way to care for her body. She is coping with her chronic illness by taking it all in stride. She views the illness as part of her, not defining her. She keeps her own health journal, does her own needle sticks for subcutaneous immune globulin (SCIG), and at this stage, she is very comfortable with treatments and the tools she needs to live a normal life.
For us, the coping process is ongoing and evolving. There have been many blips along the way as we have gone from a parent managing a disease to a young adult coming to terms with her own condition. There were transitions — from infusing at a children’s hospital, to home health care and, again, switching from IVIG to SCIG. During these transitions, we turned to education and learning as a coping strategy. Even when treatments are going well, I have to remind my daughter (and myself) that it's natural to feel sad or worried from time to time. Recognizing and being aware of these emotions as they surface is all part of the coping process in her lifelong journey of acceptance.
Everybody's process of coming to terms with and accepting a chronic illness is different. In fact, most people find that coping ebbs and flows like the tide, ever changing depending on the day and circumstance. How have you coped with diagnosis? What has helped you in your journey of acceptance?