In her own words: living with sickle cell anemia
As told to Elissa Sonnenberg, MSEd
Naomi M. is a 41-year-old African American who lives in Ohio with her 16-year-old daughter. She has known about her sickle cell anemia, a red-blood cell disorder that results in pain and low blood counts, since she was a young girl. She works as a clerk in a non-profit organization, and says becoming a mother helped her learn how to deal more effectively with the genetic condition. She also enjoys arts and crafts.
What was your first sign that something was wrong? What symptoms did you experience?
I remember in elementary school being extremely tired and having pain in my legs.
What was the diagnosis experience like?
Since I was diagnosed at age 3, my experience of what it was like didn’t actually kick in until I was a teenager. When I was younger, my parents were extremely frustrated most of the time.
Right after my diagnosis, my mom and dad were somewhat relieved because they had taken me to three hospitals that treated me for arthritis, ear infections, and other things. They had no clue what was wrong with me. My dad refused to allow one hospital to do a spinal tap on me to explore, so he took me to a local university hospital. One of the interns found out that I had sickle cell through a series of tests. After that, my parents were extremely worried and overprotective most of the time.
What was your initial and then longer-term reaction to the diagnosis?
My initial reaction was that of fear. I thought that this clock was ticking, that it was not fair that I had to die without a chance of real life, even though I did not know what real life was. Longer term, I was still afraid because that was what existed in the communication of this topic with doctors and my parents. I hated living. I never thought that I would have a normal life. Living was just waiting for the latest pain crisis to be over with and hoping that another one didn’t come too soon. I began to not care about my life until I was 25 and pregnant with my daughter.
How is sickle cell anemia treated?
I was given strong pain pills when I was in junior high to treat my pain. I hated it because I had to work extra hard to focus in school, but it worked. I would fall asleep and other kids thought that I was on drugs.
After having my daughter, I met a doctor who believed in me. I told him how I hated being on the drugs, so he started me on Tylenol 3 with codeine. To this day it works just fine unless I have a really bad crisis.
Did you have to make any lifestyle or dietary changes in response to sickle cell anemia?
I must make sure that I do not overexert myself and I must drink plenty of water.
Did you seek any type of emotional support?
I did not seek any emotional support, but I should have. Emotionally, I was unhealthy. I became religious when I was about 22, and slowly but surely I started growing and healing wonderfully.
Does sickle cell anemia have an impact on your family?
My family drove me crazy during my pregnancy. They thought that I was going to die and they were still doubtful after I had my daughter. They wanted me to make arrangements for her if something happened to me. To this day, I have not signed those papers.
What advice would you give to anyone living with sickle cell anemia?
Don't give up emotionally. Know your body so that you can describe in detail what the pain feels like and so that you can know when it's the sickle cell or something else. Do not be afraid to tell a doctor what medication you do not like. Seek emotional help at the first sign of emotional and mental upset.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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