Put simply, I wish I could just get up and go! 

‘The pain was really bad, and I had to take codeine and naproxen often on these occasions, sometimes even morphine’.

I have sickle cell anaemia (HbSS) and it has interfered with my life a lot, but I would not necessarily say ‘stopped me from doing things, for me, it’s a case of doing things differently.

I have had a hospital admission every term when I was in university – this is every 10 weeks as you can imagine sickle cell did impact my studies however adjustments were made such as getting extensions on deadlines when needed due to sickle cell. I still ended up graduating with a 2:1 from UCL and more recently became Chartered.

I’ve also tried to do High-Intensity Interval Training (HIIT) many times and have had many sickle cell crises straight after exercising, sometimes even during exercising. The pain was really bad, and I had to take codeine and naproxen often on these occasions, sometimes even morphine. I realised that HIIT was triggering the crisis for me but kept pushing myself until I eventually let it rest because it really is not by force to do HIIT. Instead, I do exercises that are less intense and (try to!) attend Pilates classes regularly.

I have missed out on a lot of things due to this condition – work opportunities, planned holidays, birthdays and more. I’m also a creative and agency-represented model, a few years ago I was on hospital admission for almost a month and was booked on a job with Wella during this time but had to miss out on it! There have also been so many milestones and family events that I had to miss like my aunt’s 60th birthday – I was unable to travel for this due to having a sickle cell crisis and chronic pain that I had been experiencing for months.

I wish I had more energy and didn’t experience fatigue. I wish I didn’t have to avoid extreme temperatures and could wear whatever I wanted, whenever. I wish I didn’t have to go at a different pace from everyone else. I wish my body would work with me. I wish I could wake up and jump straight into the shower without having to wait for the pain to settle and my body to regulate due to the daily background pain I experience. I wish I could travel without the extra preparation beforehand i.e., getting an updated travel letter from my consultant, getting my controlled medication from the hospital, taking my protocol with me in case I have a crisis abroad, researching hospitals in the destination just in case anything happens etc. I wish I could just leave my house without having to think of every possible scenario and carry my medication with me everywhere I go.
Put simply, I wish I could just get up and go!

I wish people knew that everyone’s experience with sickle cell can be different. Every day is a fight, simple things like walking up the stairs can be difficult on bad days. Everyday tasks that we often take for granted can be a challenge for me. I wish people knew that there is more to sickle cell than having a vaso-occlusive pain crisis, there is so much more that comes with this condition and it affects every part of your life. It can be very debilitating; I have had complications with my legs and had to learn to walk again. I also experience pain and discomfort every day (mainly in my joints), it may not be an acute pain crisis however the background pain is still there, lingering – blood doesn’t just stop sickling. I may ‘look’ well, but it doesn’t necessarily mean my body is functioning as well as it should be for somebody without any health complications. It’s an invisible illness.

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