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Chronically buggered? Me too!

Labels and silver linings

Hi and welcome to my blog!

My name is Franki, I’m disabled. I have hEDS, POTS and MCAS. A spoonie through and through. I am also dyslexic and bipolar.

I’d love to talk about the advantages of receiving a diagnosis or ‘label’ to a condition. Some people dread getting a diagnosis for a disability or because they’re neuro divergent. As we’ve often been taught its something scary. So I hope to share some of the amazing things that have happened to me because of my labels.

I was diagnosed at 14 years old with my physical conditions, and truthfully, I was in a right pickle. Part of why I was in such a pickle before my diagnosis, is that I didn’t fit a government or an NHS ‘tick box’, as my conditions are rare, and present differently in every case. I was completely overwhelmed when the doctors finally figured out what was causing my problems, and told me I would be like this for the rest of my life… I saw my life slipping away from me. What I didn’t realise at the time, was that getting my label was about to be one of my biggest advantages in life!

Getting my Labels meant I was able to get the time and extra help I needed in school. It also gave me a whole new perspective on life. It led me to a job where I could help others, not just medically but mentally! I got into the medical side of underwear! Yes, you read that correctly. I had a totally different perspective compared to everyone else in my field. I was able to teach carers how to help others like me in a dignified way to dress, reduce pain for some, or be a relatable source of comfort to those struggling. It also helped my coworkers to understand if I needed an extra break, or to sit down. My workplace made adjustments to make sure I was safe doing what I loved.

My label all

owed me to access a blue badge, and a Motability Scheme car, giving me back my freedom! On days when I’m not doing very well, it gives me access to a CEA card, a Nimbus card, even sometimes a free carer pass. Meaning I can still go out with my friends and family but in a way that suits my needs on that day, rather than being stuck in my room. It has opened the door to safer travel, with the sunflower lanyard scheme, making airports a safer environment. I get a badge to wear on the trains and tubes, so I don’t have to verbally fight some stranger by listing off my medical history to prove I need the seat.

Hospitals finally had to listen! No more being told its all in my head, growing pains, or that I needed to ‘put my big girl pants on’. They finally (not all the time, there’s always one medical professional that thinks their way is best) take my symptoms and treatment suggestions into account when coming up with a treatment plan. So complications and distressing episodes happen far less frequently.

A diagnosis is yours to use however you want. If you want people to know about it that’s up to you. If you’d rather no one ever knew, that is also up to you. I personally feel that if you have one, use it to your advantage, it doesn’t rule your life, it enhances it!

Thank you Franki, looking forward to working with you at SLCC Youth Group.

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