Disability History Month - Charlotte's story

Disability History Month 2021 logo NEW

To mark Disability History Month, Charlotte shares her story about her diagnosis of M.E and what her hidden illness means to her.

I recently decided to update my CV.  

I started In the Ambulance Service 19 years ago, aged 18. I joined as a 999 Call Handler based in Norwich. I remember picking up my A level results in my uniform because I was due on shift afterwards. My 'I just need to get a job' turned into a career and family that I never wanted to leave.

In 2018 I went on holiday to Italy. I had the most amazing time. Unfortunately, two weeks after my return I became ill. I was hospitalised with Hepatitis and an enlarged spleen. After many tests and questions about what I ate and who I had been in contact with, they discovered I had contracted a virus called CMV associated with poor hand sanitation when preparing food.

Italy left a mark.

Fast forward to February 2021 after several years of ‘post viral fatigue’ illness and fighting for myself with my GP, I was sent for specialist assessment where I was diagnosed with M.E.

That one sentenced changed my life in an instant. So many questions flooded my brain. Will I ever be able do my job again? At the time I was on reduced hours to help with my fatigue, but I couldn't see a way out of how I felt. Was this the new me? Barely able to walk a mile and never again able to play sports. Would I be able to have children? At 37 I already felt like time was slipping away but now this bombshell.

I am not embarrassed to say I had a melt down. I was angry, scared and grieving for a life I had lost and didn't even see it coming.

So here I am updating my CV because I don't know if I'll be able to carry on in the job I love - Hobbies: A little walking, Reading, watching sport (big football fan come on you yellows) history and traveling.

I compared this to my C.V last updated in 2014 - Hobbies: Netball, Tennis, the gym 4 times a week, walking, travel, reading,  swimming and  running ( training for my first 10k).

I thought to myself ‘But I look no different to the person I'm reading about in 2014’ (maybe a few more pounds and wrinkle here and there) why can't I be that person anymore? How do I explain to people I'm not that person anymore? I look the same but what I fight everyday is hidden. I have to explain myself over and over again as to why I physically can not do that anymore. Some people get it and some stop asking you to be part of events because it ‘won't be your thing anymore’.

When people ask me how I am, I just say ‘fine thank you’ because saying how I really feel can lead to people saying ‘Well you look fine’ or a little side glance as they look you up and down for the cause of all your pain. Check complete ‘oh is there nothing you can take for it? No cure?’

Another one bites the dust...

I feel I have to verify my illness to myself and others constantly. Because if people can not see it they simply forget.  Everyday my body is in pain. Everyday I have to plan my tasks out to make sure I have adequate rest. I'm exhausted every day and I've stopped saying so because sadly people don't understand what that is like.  ‘Oh, are you tired again? Yeah me too’.

I'd love to just feel tired ..... and to know why. But instead, I am exhausted even after 12 hours sleep. But it’s hidden behind the person who looks exactly the same, so I don't say anything. Every day I am reminded I am not the person I was three years ago because my body will not allow me to be.

However, my CV remains unfinished, because I'm not ready to give up that bit of old me up yet.

Finding who the new Charlotte is, is a work in progress, but I realised I am still me, just with M.E and that doesn't have to define me.

Published 24th November 2021