Bristol’s oldest Sickle Cell Disorder sufferer Tina Johnson-Martin talks frankly about her ordeal and how she has lived through it.
“When I was first diagnosed with Sickle Cell Disorder 59 years ago, I believed I had come to the end of my life, because of how dreadful it sounded.”
“My name is Tina Johnson-Martin, I am 82 years old, born in Jamaica, and I have the Sickle Cell Disorder (SC). My ordeal started when I was a child, I was a cranky one, who was always in pain. I remember there were times that the pain was so intense that I found it difficult how to explain to my parents how and what I felt. My parents had np awareness of my situation, and didn’t no how to help me.
The Hospital was of no help because of lack of technology to conduct medical tests to help diagnose what was wrong in my body. I had to live in persistent pain.
Sometimes I was even insulted and called names by nurses who had no awareness of SCD, such remarks as “get off your lazy ass, there is nothing wrong with you”. There were others who believed that I was a drug addict who lies about being in pain, to get fixed on drugs.
There was a time I became so depressed by the stigmatization I received at the Hospital, that I made the decision to stop going. My parents unable to bear the pain of my condition consulted a doctor, who came to our home occasionally to offer me treatment. With my condition still not improving, the doctor took me back to the Hospital, where he explained to the nurses that I was seriously in pain and not pretending. The Doctors and nursing staff’s attitude towards me changed, and they started being nicer, but still didn’t know how to treat me properly.
“The nurses thought I was a junkie; they never understood the pain I was going through.”
A reason to live
It was in 1963 when a doctor finally diagnosed my condition as Sickle Cell Disorder, I was so relieved because I was finally able to understand my situation better, it also helped me to understand why I had always been different from my friends, who were not carriers of this genetic disorder.
I had my first daughter that same year, and started paying ore attention to my health, because I had become more enlightened about my condition. I started drinking plenty of water, eating good food and fruits, exercising daily, and dressing warm at all times. The doctor explained that these are ways to prevent crisis.
Each SCD crisis is always a very bitter experience, I wish I could make them go away permanently, because whenever I’m in crisis, every organ in my body is affected; I bleed from my eyes, my kidney bleeds, and I feel pain in every part of my body, which would make me curl up, lying still in one position for hours until I’m relieved of the pain.
Oftentimes the crisis occurred at my workplace, and my bosses at the time had no choice but to send me home. There are so many things that I would want to do, but because of my condition I cannot, which hurts me a lot.
My ongoing struggle was hugely relieved when I heard about OSCAR Bristol, and joined the organisation many years ago. The support I received was enormous, the team was fantastic, and I must say, joining this organisation has been one of my best decisions ever. It changed my story and helped me in so many ways, that I cannot quantify. I attend the seminars, where I get information that I did not receive in any Hospital, at the time of joining, the organisation had a certified genetic disorder counsellor, who counselled us, and gave us access to useful and helpful information on our condition.
OSCAR Bristol helps by enlightening people that are in similar conditions as myself, and also prevents them from going through the emotional trauma, that I went through.
Being part of OSCAR Bristol is beneficial, in the support and information provided; unlike before, there is so much more awareness of SCD. Now a carrier like myself can live a happy life, thanks to such exposure groups as OSCAR Bristol.
It is so wonderful now, that when during group meetings, I tell people about my condition, I am never judged or stigmatised, on the contrary, people are very supportive, and my life story encourages other sufferers.
I have two daughters and two granddaughters, my oldest granddaughter is 32 years old, whilst the other granddaughter is 16 years old. My daughters have the Sickle Cell trait, not full blown SCD, but take very good care of themselves.
Many people never thought that I could make it this far in life, because I never saw surgery as an option, but I stayed strong and positive, and here I am, 81 years old with Sickle Cell Disorder and still going strong.”
By Tina Johnson-Martin (Aunty Tina)