Anne has lived with sickle cell disease all her life, but she sees that it was the illness which helped her become the successful, contented woman she is today
In the end, it was my nursery school’s concern about me eating plastic foam that led to the diagnosis of incurable, debilitating, and dangerous sickle cell disease (SCD).
While the illness, a constant in my life since the age of six months, has sent me to the depths of despair, I have learnt to value the lessons it has taught me, and it has made me realise that every cloud has a silver lining.
SCD is when your blood cells, normally round, are curved and hard. This means that they don’t flow as easily, and can get stuck in the small blood vessels in your chest, stomach, and joints – what’s known as a sickle cell crisis. The intense, debilitating pain this causes can last from a few hours to a few weeks.
I was born in Nigeria in 1980, and while there were warning signs in the form of unexplained swellings and pains, it was only after we moved to the UK that I was diagnosed, when my nursery school picked up on my strange craving for foam – something which is apparently common in sufferers of SCD.
SCD wasn’t well known at that time, and finding the correct pain management for a small child was difficult, leading to me spending a lot of time in agony – distressing for me and my family.
By this time my father had returned to Nigeria, so my mother was studying for her teaching qualifications, looking after three children single-handedly, and dealing with an extremely sick daughter. In addition, she had been told that children with SCD had a reduced life expectancy, so she was terrified of losing me.
Starting primary school was a challenge. My mother gave teachers a care plan, and I was allowed special ‘privileges’, such as being able to drink water in class, and having regular breaks if I was tired. The other children didn’t understand my special treatment, and I also couldn’t join in games, so I became isolated.
At seven, I moved back to Nigeria with my elder brother and two younger sisters, to live with my father. But it was then that the family was struck a devastating blow – the death of my brother, Eric. He had fallen ill, and, after an operation in hospital, he had caught an infection that killed him.
I felt overwhelming guilt when Eric died, asking myself why he was taken and I, whose illness caused my family so much heartache, was spared? The loss of my brother made me determined to find a direction in life, and to fulfil a higher purpose.
When, as a teenager, it was decided that it was time to move back to the UK to live with my mother – now a primary school teacher – it meant another massive readjustment. To make matters worse, I had failed the GCSEs required to start college, so I had to find somewhere to retake my exams.
Despite everything life has thrown at me, I have achieved things I never thought possible
This was a very difficult time for me. I was in a new place and was struggling with my identity. Who was I, apart from the sick daughter/sister/friend? This negative mindset meant that I wasn’t taking care of myself, so as well as being mentally low, I was constantly ill, creating a damaging downward spiral. Once again, my education suffered, but I achieved enough to get in to college.
From there, things started to improve. I got a grant to buy a car, and was given a disability badge, which made life much easier and college more accessible. I began to believe that I did have a future. When I found I had been accepted on a degree course, I was determined that my illness wouldn’t hold me back.
University was a real turning point. I came to understand that I had to ask for help. I realised I had to be kind to myself, focus on the positives, and stop comparing myself with others.
After leaving uni with a 2:1, I had a new sense of purpose, and undertook a master’s in investment management, which I hoped would give me a good start for a career.
My approach to life was slowly improving, and I had more faith in what I could achieve. By this point I’d still not had a romantic relationship, partly because my mother wouldn’t have approved, but also because I was nervous of the impact my illness would have. Who would want someone whose condition has such an impact on their life?
A chance meeting in a record shop changed all that. I was instantly attracted to Marvin, and on our third date told him about the illness. To my surprise he wasn’t disgusted, but interested and concerned. It was three months later when he first saw the real impact. We were making dinner when the pain struck. I asked Marvin to call an ambulance and ring my mother.
He hadn’t met my family yet, so my mother was surprised to see a stranger at my hospital bedside! When he left, I was sure I’d never see him again. But when I checked my phone later, there were a number of missed calls, so I was reassured that he was here to stay.
We got married after six years, and although I was still worried about the illness getting in the way of our relationship, he was always supportive.
I was desperate to have children, and before long, despite worrying about the risks caused by my disease, I found myself pregnant. I was working full-time at Lehman Brothers, but after three months had to face the fact that I couldn’t physically meet the demands of the job.
I reluctantly left, but still needed a challenge, so decided to volunteer with the Sickle Cell Society and joined the board.
A year later I was appointed chair, and we lobbied the NHS for improved screening, raised awareness and improved treatment.
I am now happily married with two beautiful children (Connor and Caroline), and despite everything life has thrown at me, have achieved things I never thought possible.
Living with SCD is difficult, and there is a strong link between the illness and depression. I never know when I’m going to be ill, so I live day to day. I have learned to accept that I cannot be all things to all people, and must live as best I can – and only I can do that.
I defeat any negative thoughts by considering all the positive things I have in my life. This isn’t always easy, but I’ve found it makes a real difference.
After years of struggle, I can now say that I am truly happy and blessed. My illness has led me to do things and meet people I would not have otherwise, so in some ways it has helped me achieve more than I ever thought possible.
Oh, and sometimes I still have a craving for foam!
Graeme Orr | MBACP (Accred) UKRCP, says:
For Anne, living with a chronic condition brought many challenges. Throughout her experiences, she struggled with her mental health, identity, and emotional state. Starting university was a real turning point for her, and the place where she began to feel she was improving. Later, meeting her future husband, she found someone who loved and supported her, and whom she could trust and rely on. Anne found that with self-care and his support, anything was possible. Perhaps asking for that same support and self-care could help us all.