As a 22-year-old it never did dawn on me that I could get ill long term. I was aware tragedies unravelled around the world and there was a darkness we are mostly insulated from. Yet, in my early 20s this was not something I needed to concern myself with and had a sense of invincibility. However, life has never bestowed her gifts and trials equally and was not about to start now.

In August 2018 I began to experience a number of symptoms: headaches, bruising and fatigue (no doubt many of which you will have experienced). As these worsened, I eventually found myself in hospital after an urgent blood test had betrayed a very low blood count which would later be diagnosed as severe Aplastic Anaemia.

My first reaction to this news was one of relief. At that point, I was facing two outcomes: leukaemia or aplastic anaemia. To hear it wasn’t cancer was great news and I had heard of anaemia before which was an easily manageable condition. Whilst I still remain grateful it was not leukaemia, I don’t think I would have breathed that sigh of relief if I knew what was to unfold in the next two years.

At this stage it is worth noting I am writing this from the comfort of my flat, working full time and leading a relatively normal life. Yet there is a tendency for us to forego the story in between diagnosis and recovery. As a mixed-race male my journey with aplastic anaemia has been far from a story of sunshine and roses. I have not run a marathon (and don’t intend to), climbed Mount Kilimanjaro, nor have a toured the world since getting through the worst of my treatment. All these options remain on the cards and they are attainable goals but when you are at the start of your journey it is not necessarily something you need to concern yourself with.  

What I found helpful in the first instance was to shorten my timelines. One of my nurses told me aplastic anaemia is not a quick fix and time has proven him right. At the best of time, I was able to plan a couple weeks ahead and at its worst a couple of hours.

Since my initial diagnosis I have undergone ATG treatment, two haploid bone marrow transplants and multiple trips to the ICU. Experiencing the true range of emotions from gossiping over Love Island with my sister on the ward, to the hopelessness of failed treatments and the elation when you score little wins.

Trust in the process and yourself. Whilst this is your journey you do not need to carry the weight of it alone. I have often found myself feeling isolated due to the rare nature of the illness. Yet what I have learnt is empathy is not born out of experience. Share your trials and tribulations, good and bad, with those closest to you. This has helped me immensely.

Everybody’s journey with this rare disease is different and I hope anyone reading this will have plain sailing. However, it is worth noting that you are not alone if you do not have the fairy tale experience. It is a challenge but with support and the NHS it is one you will no doubt rise to meet.

Hi there I'm Ben. I was diagnosed with aplastic anaemia when I was 22, and as a mixed-race male I had a more difficult transplant journey than some of the other people I met in hospital.  Read more from Ben    Read more AA voices

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AA voices

AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].