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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Emily's Story.'

Rainbow waterfall

I’m Emily, or Em if you want to. I’m 19 from a little corner of the countryside. I’m a part time admin assistant, uni dropout and blogger on the side who’s still trying to workout what she wants to do. I’ve had ME/CFS for the past 3 years now, which is a neurological chronic illness which causes a whole abundance of things such as mental health issues and the dreaded brain fog.

Before I was diagnosed I'd wake up every morning at like 5am and run a good 3 miles before I stared my day. I also danced a little bit. I work on sessional contract with the NHS, meaning I choose whether I want to work. I’m lucky in that my dad is the boss so he’s very understanding. I also work within the mental health team so they are all very good to me. At the moment I only work 2 days a week but I’m working towards being freelance and working for myself.

I remember the day I first came sick with a bug. It was like my second week of a levels in September and it was literally a bug that’s all. But the next few months are very blurry as it was just a whole period of long nights, anxiety attacks and trying to tell people something wasn’t right. It wasn’t until January I got a diagnosis.

The first few doctors I went to brushed it off saying it was just taking a while for the bug to budge. Luckily one doctor saw the physical and mental struggle I was going through and referred me. From then on everyone said it was so obvious what my signs were and it seemed to go more uphill.

I had no clue what CFS was so I gave it a little google but kept an open mind. But once it was all diagnosed I did a lot of hardcore research. For me flares are so sporadic, some days I can go to work then go see friends and walk my dog and be fine, other days I can get to the bathroom and I’m done for the day. But I think travelling on public transports a big trigger for me.

Imagine looking through one way glass. You can see outside perfectly, you perceive the world as you did. And everyone sees you as you, or Just an average person on the street. But within this glass you’re running out of oxygen, you’re alone with these thoughts, but nobody can see it.

I also use the spoon metaphor a lot for people.

Flares definitely affect me mentally, it just messes with my confidence. And luckily they’re only happening like once a week or a fortnite. But there have been times it’s been every day or what just feels like a permanent flare. I cope with the flares by trying to stay sociable and not let myself get in my own head. Also being with my dog is the best cure haha!!

My main trigger are transport & talking to people. I try to keep medicine as a last resort. I try stick to keeping a healthy lifestyle as best as I can. But I do have vitamin D tablets.

My biggest tip would be to tell people about your illness, they won’t understand much but it’ll involve them in your life and yours in theirs. And find hobbies you can do as a coping mechanism and maybe something to try keep your mind occupied during a flare.

More recently my illness has been a big negative impact. I sadly had to leave my training at Drama school which was hard. I’ve been training to be an actor for the past 11 years and now it’s all gone. But it’s opening doors for other things. My illness has stopped me from working and training and being as sociable as I’d like to be.

I’ve lost a lot of friends I won’t lie. But I see it as a big evaluation as to whether they were truly my friends. The whole seeing me at my best and worst thing. But over the years I’ve worked on friendships and although it’s not perfect, I’m getting there. Bloggings helped a lot! Luckily my boyfriend is very supportive, and tries to understand/help as much as he can.

I’ve always tried to keep a positive mindset about things. And my illness has definitely made me more grateful for the little things and people in my life, because there have been moments I’ve not wanted to be with me, let alone them. And I just see it all as a new perspective and opportunity to do new things. I compare how I was back 3 years ago to me now and it’s a huge motivator to just keep plodding on.

My hope for the future is to just be able to live comfortably and happy, have a nice social circle and be able to move out knowing I’ll be okay. I’d love to be able to travel a lot more too!

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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