Living with Thalassemia
by Laurice Levine, M.A., C.C.L.S.
Although I do not remember being diagnosed at 14 months of age, I remember being sick often as a child. Doctors' appointments, medical procedures, and surgeries are a routine part of life. Thalassemia is a high maintenance disease and, like many chronic illnesses, survival is often a fight. Therefore, I have a heightened awareness of my own mortality. I do not fixate on death, but I definitely do not plan far ahead into the future. This is not to say that I do not have a plethora of hopes and dreams.
Thalassemia has made me determined and has given me a strong will. Having a chronic illness has also taught me to be empathetic. I love people and my family and friends are my greatest treasures. My ultimate goal is to be the best person that I can be. I do not know how long I will be on this earth, but my desire is to make a difference in people's lives. Quality of life is more meaningful than quantity.
I always strive to live positively with Thalassemia, but at times it is frustrating having to deal with a chronic illness that consumes an exorbitant amount of time with transfusions, a nightly desferal regimen, constant doctor's appointments, and various other procedures. If I could chose, I would not erase Thalassemia from my life, rather I would change the way illness is managed in our society. The uphill battle for me is not always the medical dimension of the disease, but the bureaucracy that defines the health care system. Insurance is stressful for countless patients. On several occasions, I almost lost my medical insurance and more than once I have been denied coverage due to my pre-existing condition. It was my medical insurance, not ill health, that almost prevented me from attending graduate school because my HMO would not offer me out-of-state coverage. Unfortunately, insurance companies, not doctors, dictate what procedures can be performed, the length of my stay in the hospital, and what medications can be used. Insurance coverage has also been a financial burden. When I worked as a preschool teacher for 6 months, my insurance payments and medical bills exceeded my income.
One of the most difficult aspects of living with Thalassemia is coping with the burden it places on family and friends. My family is extremely supportive and I believe that my Thalassemia has strengthened our family dynamic, but that does not eliminate their worry and stress. Chronic illness can adversely affect the marital relationship as well as the siblings involved. There is s dire need for support services to help manage the stress placed on the family as a result of chronic illness.
With improved technology and medical advances, people with Thalassemia are living longer. Therefore, consideration must be given to the new issues, such a fertility and employment, that arise from an extended lifespan. Support services and outreach programs are critical in helping patients cope with these challenges, but programs such as these are often difficult to access. With budget cuts and rising costs in health care, programs either do not exist or must be eliminated.
If I could advise clinicians, I would encourage them to make every effort to humanize health care. I respect my doctors and place much trust in them. Doctors are inundated with a large volume of patients, research, and education, thus making it easy to lose sight of the meaning of medicine-healing. Healing goes beyond prescriptions and procedures. Healing is listening, caring, answering questions, being honest, and treating a patient as a human being. Collaboration among disciplines is especially important with Thalassemia because the disease affects so many physiologic systems. The patient and family must be seen as an integral part of the team and children must be encouraged to be proactive in their own care.
I must emphasize the importance of specialized Thalassemia centers and centers of excellence for specific diseases in general. Thalassemia centers across the United States are few and extremely difficult to access. Health care is decentralized, due to lack of funding, which is also problematic. Many doctors are not informed about Thalassemia and the complexities of the disease. Consequently, it is often up to the patients to educate them. As the survival rate of patients increases, a benefit of specialized care, it is imperative that we strive for standardized and centralized Thalassemia care. A multidisciplinary team approach of experts, working together, can greatly improve the quality of a patient's life.
Despite the challenges I face, I would not change the fact that I have Thalassemia. I would only change the bureaucracy that underlies disease in general. I have come in contact with many amazing individuals with Thalassemia who have become some of my closest friends. It is difficult to witness others fighting the same battle and it is devastating to lose loved ones to this disease. I will never get over the death of my friends, rather I have integrated the grief into my life. I carry a torch in my heart for them as I try to seize each day and live life to the fullest.