By Alyssa Rosengard
A few months ago, I was sitting in an infusion chair, getting my dose of IVIG (intravenous immune globulin), when an oncologist approached a young woman next to me and was discussing the course of her treatment for idiopathic thrombocytopenic purpura (ITP), a genetic bleeding disorder. I felt my world slam into me as flashbacks of blood blisters in my mouth, not being able to use a toothbrush or razor, a dicey splenectomy surgery and experimental chemotherapy struck me like lightning. Ten years earlier, my road to being diagnosed with a primary immune disorder was rough. The bleeding disorder turned out to be a symptom of a larger, full-scale breakdown of my immune system known as common variable immune deficiency (CVID). What I most remember from that time was feeling completely out of control, confused and terrified. What was my body doing? Did my doctors really understand how to treat this rare illness? Although that time of uncontrolled bleeding is in the past, and I have come to understand how to take care of my disorder (through research, resilience and tenacity), I felt I needed to speak up to this lovely woman next to me and offer support. What can we do when we are faced with tough situations in life but to offer help to those who must unfortunately travel a similar path?
At first, I did not know what to say so I simply introduced myself. “Hi, my name is Alyssa. I didn’t mean to eavesdrop, but I have had the same disorder as you.” The young woman looked at me with stunned silence and then slowly began to tell me what was wrong with her and how she was being treated. She was confused. The oncologists had not explained how she became struck with such a rare disorder nor had they told her what was occurring in her body. She was in the dark and scared. I assured her that she could ask me anything she wanted, not to be afraid and let her know I had been in remission for the past 10 years. Tears welled up in her eyes as we talked. She asked me many intelligent questions that the doctors had neglected to tell her. Though tempted, I will not divert into a discussion of the responsibility of physicians and the failing of our healthcare system to treat us as people. She was relieved not only to know there was a positive outcome to this insanity but that she was not alone in her struggle. She asked me if she could hug me, even while connected to tubing and the IV pump. Of course, I agreed.
Caring for others helps alleviate pain, discomfort and depression. A primary immune disorder is isolating. I am confined to the house due to infection or risk of infection. I am an extrovert by nature and due to this illness have learned to live a more solitary existence. I have grown more self-centered due to some of the painful symptoms. I do make a concerted effort to step outside myself and ask how friends and family in my life are doing and offer a helping hand. It is not easy when faced with constant pain, nausea and general illness. It is one of the most important steps to take when dealing with chronic illness because we tend to go inside ourselves, retreat because our bodies feel out of control. When we take those brave steps outside ourselves to physically or emotionally help a friend, family member or complete stranger, our spirits are lighter. In Judaism, we call that a “mitzvah” or good deed. We remember we are a part of the human race. We raise our self-confidence and satisfaction in our own lives.