My illness is something I have often talked about but have never written about. I guess it is because when you write about it you can’t cut the tension with a giggle or a little joke. However it I feel like it is an important issue to be aware of especially since it is the 2nd most common genetic disorder in the UK.
The last thing I wanted is to tell a story that was really sad or made you pity me. I didn’t want to write a long piece talking about how difficult life is for me or about how sad I am about never being able to have a ‘normal’ life. I can understand that reading this may be a little hard to swallow, you never want to hear that people you know have struggled in ways that you can not fathom. But the brighter the light is that is shone on these issues, the easier living together in cohesion will become.
So the truth is that it hasn’t been easiest life but it is all I have ever known. Both my parents have a sickle cell trait which meant it was possible but not definite that I would be born with the full-blown disease. I feel like it would have had a different effect on me had I had lived my most of my life not knowing about it.
Sickle Cell disease is a genetic blood disorder. The disorder affects the red blood cells which contain a special protein called haemoglobin (Hb for short). The function of haemoglobin is to carry oxygen from the lungs to all parts of the body. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they don’t live as long as healthy blood cells and they can become stuck in blood vessels. If you want to read more about the science behind it you can here. When this happens it causes a very painful episode known as a sickle cell crisis. This can last anywhere from a few hours to a few days.
My childhood was relatively normal. All it meant was I had few more trips to the hospital than the average kid. I was physically able to do the same things as the other kids. I didn’t feel very different because a few of the children in my class had sickle cell to, as it is quite common amongst Afro-Caribbean people. My primary years were full of a lot laughter, fun and the dramatic goings on of a primary school playground. I had quite frequent crisis’ as a kid and would always have to take a couple of days off school to recover.
Describing the feeling of having a crisis is so hard because it is something I only let myself think about in that moment. Once it’s past – it’s gone and not even worth me thinking about. Everyone with sickle cell has a completely different story about their painful experience. Mine always engulfed my lower back first before moving on to my arm and leg joints. It is an intense, excruciating sharp pain which also feels like it’s pulsating. Sounds awful I know, not something I like talking about. However 9 times out of 10, after a horrendous long night of my crying out in pain in my mother’s arms, I’d eventually drift off and wake up to find the crisis is over.
This is pretty much how my primary and secondary years went for me. I didn’t crisis to often, probably no more than 8 times year and made sure to completely make the most of the times that I was completely healthy!
Having parents who were always there for me and saw me at my very worst and very sickest has had a lasting impact on me. My positive attitude towards my disorder and the way I have chosen to deal with it came from my mum. She instilled two key things in me.
‘Don’t see yourself as disabled.’ My mum has worked in the NHS for most of her working life in a very different time. She knew that however wrong it is, once you check that box you open yourself up to a discrimination by people who will never admit to it. Her sister – my aunty was born with cerebral palsy, so she saw first hand the ugly face of discrimination and hatred towards the disabled.
Sickle cell by all intensive purposes is invisible. So it would do me well to keep it that way. This is something I have always kept with me. I have never written it on a job application. My philosophy is get in through the door, show them how great you are and when the times comes for you to explain why you need to leave early again for a doctor’s appointment – then I discuss it in-depth. By that time, they know me and like me and appreciate the work I have done and will continue to do for them.
‘Don’t marry someone with sickle cell.’ She doesn’t actually mind who I chose to settle down with but if I was to have a child with someone with sickle, that child will 100% be born with sickle cell. It isn’t something that I’d wish on anyone so if I could help it I’d rather not pass it on.
Using all the advice I got from parents, peers and doctors I was able to live a fun teenage life. I made great friends who were always understanding, I picked up some bad habits that were not great for my health and I pretty much was a normal ‘semi-rebellious’ teen. At one point I got pneumonia, which sucked and at one point my hands and feet swole up like balloons and I had to crawl everywhere for about a week. That also wasn’t great. In year 11 I got gallstones which REALLY sucked and I had to get my gallbladder removed which was nowhere near as bad as I thought it would be. Compared to a crisis it was a walk in the park. My body was and is really weird and reacts to things in the weirdest ways BUT for the most part I was good. Collectively these things sound quite bad but they happened sporadically over a period of 10 to 15 years.
At 18 I experienced one of the worst thing that can happen to someone with sickle cell – a stroke. Intense fatigue, an awful migraine and lot of confusion is the best way to describe it. I wasn’t afraid because I didn’t know it was happening. It was on Christmas day which was such a pisstake but I didn’t go to the hospital until the next day because I still wasn’t aware of what was going on. At no point when the doctors were explaining what was happening did I feel fear. Mainly because I was tired and confused and because I could see how guilty my parents felt for not realising sooner. Obviously I knew it was not their fault but I guess part of being a parent is feeling completely responsible for everything that your child goes through.
It was only a mini-stroke so within a couple of days I was back on the mend and had regained the feeling in the left side of my body. Friends and family were being amazing. Something I learnt from my earlier experiences of being is hospital is you could ask for pretty much anything and people would bring it to you. I’d ask for rice and peas and curry goat, KFC, magazines and pretty much anything I could think of that I fancied at the time. Also people always just brought you Lucozade, I guess that’s thing you do when someone’s in hospital.
And that was that. I was in hospital for two-weeks, in physiotherapy for a month. I had to drop out of college but in hindsight I could have gone back sooner but chose not to. The year went by and despite the dramatic health issues it was a pretty good year. I had 4 or 5 friends at the time who also weren’t at college so I always had people around me whenever I felt pretty low.
Some days did get very low. They say one of the post-stroke side effects is depression. There were days that I really struggled. Even though I got the all clear from my physiotherapists I never felt the same. I would forget words and lose my train of thought and was convinced that my smile would always be crooked. The NHS were great to me though and got me some help. Although I never have felt like my complete old self again, my mind and body healed over the next year.
Now for the weird part. Because of the stroke the doctors have put me on a treatment called an exchange blood transfusion. Similar to a blood transfusion but instead of just giving me blood, they also remove a few units of my ‘bad blood.’ This effectively means that they make sure by sickle percentage never gets to dangerously high levels. Yes this is intrusive and a bit of headache having to go into a hospital for a day every 6 weeks. However it means that I haven’t had a crisis in years because my blood has never reached ‘crisis’ levels. This is great for me because it means not only am I constantly being protected from the threat of another stroke but I also am currently a lot healthier than I ever have been. The weird part is because the NHS is so limited that you are only eligible for this treatment if you have suffered a stroke or another major traumatic event. So the friends that I have who also have sickle but have not had a stroke can’t get this treatment. I would never claim having a stroke is a good thing because it definitely is not but it’s quite sad that some people have to still be constantly in and out of hospital because that are ineligible.
Overall having sickle cell has shaped the way I see life. I realised a long time ago that I sometimes made myself ill by just thinking that I’d have a crisis. I would take longer to recover because I had reassigned myself to the fact that I’d always be sick. I soon realised that it was going to have to be mind over matter and tried from then on to be more positive. I noticed a difference in my attitude and pain threshold when my mind-set changed.
Medicine has advanced so much so that the first sickle cell patient has just been cured. I am told that there is still a long way to go before it is implemented in the UK but it is exciting news nonetheless. Creative outlets such as this help me to stay upbeat and give me a chance to express myself.
My body still acts up sometimes. At the moment I have an ulcer on my ankle that I have had for the last year. It can get annoying and stressful at times but I am so grateful that I can still be active and pretty much live a life that anyone else can.
For now I will remain strong in who I am, do what I can to raise awareness and carry on enjoying life.
Stay Bliss, Laura
Click on the links below if you want information about giving blood and/or the sickle cell society.