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Living with aplastic anaemia as a teenager - Sharne's story

Sharne 2

19-year old, Sharne, lives with aplastic anaemia. It's had a big impact on her mental health but despite the struggles, she's determined to live her life to the fullest. For World Mental Health Day, she has shared an honest account of her experiences - the good and the bad - to help others who may be going through similar things.

Living with this condition is by no means easy. If it isn’t the debilitating symptoms, it’s the lack of understanding from the world around us. I often have to spend days at a time in bed because the dizziness, nausea, migraines and fatigue are simply too much to handle. It is so infantilising to be forced to rely on the generosity of others simply to get your basic needs met, and the effects this has on my mental health can be catastrophic.

No one wants to be in a position where at 19-years-old, they need their Mum to feed, bathe and medicate them.  

I’m not saying everyday is like that - I’m currently studying away from home - but when things start getting bad again, I either have to rely on my incredibly compassionate close friends who I live with to help me out, or more commonly, go home, and put things on hold, which is the most difficult thing in the word as an independent young woman who just wants to be able to live her life like the rest of her peers. 

My life often feels like it isn’t even really mine, because the control this illness has over me is absolutely huge.  

By nature, I’m a busy person - I’m obviously a student, but I also work part time and I’m running for local councillor back home to try and improve things for marginalised groups like the chronically ill in our local area. I also volunteer for a few different local organisations and charities, and of course support Anthony Nolan in their fantastic work.  But managing all this is very difficult when you struggle with very debilitating symptoms.

Trying to go out and socialise is difficult enough as I am autistic and struggle with anxiety, but the pressure of ‘what if?’s in regards to the eventualities I have to plan for in public can be so overwhelming, especially for a young woman out in a big city.

Sharne wearing a black and white spotted face mask

It’s easy to feel left out, or sometimes even like you’re not doing your best, even when you’re putting your heart and soul in emotionally. 

I’m 19 and desperately trying to enjoy my years of youth. Sometimes it feels like I’m fighting a losing battle, and should just reluctantly give up on my ambitions because the extra fight I have to put in to achieve is exhausting.  But I don’t, because I know I can’t. Not only for myself, and all I’ve worked for, but for every other young person who is waking up every morning to battle a demon that’s out of their control. 

Representation ALWAYS matters.

Seeing someone like you, dealing with the same troubles you do (or very similar) and living their life to the very fullest in spite of it, is so encouraging. If my story could do that for someone, then sharing it would be worth it. That's why I'm sharing my experiences for World Mental Health Day.

Looking after our mental health.

It’s far from easy to face the world each day with the weight of a blood disorder on your back, but we’re all doing our best - and that is enough. No judgement comes from allowing yourself time to rest and recuperate.   The effects of living with a long term health condition can be catastrophic for mental health and well-being - which only adds to the difficulty.

The support of friends and family is one of few things that get me through. Besides enjoying time with my cats or listening to music, it’s tricky to be distracted but when I am it’s a moment of bliss and for a little while I get to pretend I’m like everyone else. It’s fleeting, but it’s things like that, that get me through the days. The loneliness, the guilt and the frustration becomes a little less taxing.

I live my life one day at a time, taking everything as it comes - because in all honesty, it’s all I really can do. These are the cards I’ve been dealt and I must keep muddling on because I have fought so hard for my shot at a fulfilled life and I’m not giving it up on it now, not for anyone or anything.

Chronically ill people have dreams too, and we are out to achieve them.  

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Patient support

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Blood disorder Patient stories