Wednesday 7 September 2016

Growing Up As a Young Disabled Person | #SpeakUp

You guys know, if you have been following my blog for a while and have been keeping up with the #SpeakUp posts you will know that I like to cover a wide range of subjects on my blog and with the help of you lovely lot, that is expanded even more. Often, the topics that are covered in the #SpeakUp series, I have had at least some personal experience of before. But for today's #SpeakUp post, that isn't the case at all! And you know what? I'm so okay with that!

For today's #SpeakUp post the lovely Shona ( a beauty, lifestyle and disability blogger) is going to be sharing her story with growing up as a young and disabled person. I cover mental health on my blog A LOT! You guys know that! But as unfortunate, I am to suffer from mental health problems, I have never had to deal with any kind of chronic pain or illness. On the contrary to Shona who battles every day with Marfan Syndrome which causes her extreme pain and distress. 

I know, this may seem bad of me to say but I guess I never really give people in wheelchairs a second thought, I don't think about all the pain they must be in or the simple things that must be so difficult for them such as accessibility that non-disabled people take for granted. But I am sure, it's not just me? Many of you, who are fortune enough to be active and fully abled bodied also don't think about the difficulties disabled people face? Shona really opened my eyes in this post to the reality of growing up as a young, disabled person, something I have never really thought of before. Despite all the pain, Shona remains positive and optimistic which is so inspirational. She's one brave, strong girl! Make sure you go and give her some love! 

Everyone knows that growing up isn't easy, when you're a teenager it can often feel like the whole world is against you and I don't think it's an easy time for anyone. You've got school and exams to tackle, new feelings to make sense of and probably a lot of arguments to settle, just to mention a few things. Some of us though have a few extra things to deal with; I'm not sure at what point I'd say I technically became disabled, but it was sometime in my teens that I had a new challenge to face.

I've had a genetic connective tissue disorder called Marfan Syndrome all my life and it was in my teen years that problems started cropping up more and more, I was desperately trying to fit in and make friends, but my health continuously made things like that harder and harder to do. It's not easy when friends invite you to parties or to go shopping and you have to say no because of chronic pain. 

Tackling exams while having pre-operative tests and hospital appointments all the time wasn't easy either, I spent half my time worrying about my GCSEs and the other half worrying about upcoming surgeries. I missed weeks of school at a time sometimes and was only able to do my exams due to some arrangements made like having breaks and using a computer. I'm not sure how but I did come out the other end, though; I kept my head up even when I was forced to leave school just a few months into my A Levels. 

Having major spinal surgery at 16, a follow-up spinal surgery at 17 and a hip replacement at 18 definitely makes enjoying teenage life tough, though. Facebook is often littered with photos of friends enjoying themselves and when you are sometimes bed bound it's not easy to look at such things without feeling lonely. Most people my age at either at university or working and I'm not able to do either of them things, so it's easy to feel isolated as well.

A lot of people seem to think that using a wheelchair/powerchair is the thing that I find the most difficult to cope with, perhaps in the way of lack of accessibility in shops and public places but emotionally I really don't mind getting around on wheels. It's the severe chronic pain that consumes my body on a daily basis, the exhausting fatigue and various other symptoms like dislocating joints and heart palpitations/fainting spells that I find hard to cope with. I find it difficult to understand how there are people out there who don't feel pain all day because to me that is a strange concept, I cannot remember a time when I wasn't in pain. When I was recently told I would need major open heart surgery in a few years it did worry me a little, and I got a little upset, but this is my normal. Surgery, hospital appointments and days on end stuck in bed; that's my normal.

There are so many young disabled people out there yet some people still seem to think that the only disabled people who exist are old people and wheelchair users who are paralysed. Anything in between just doesn't seem to register in some people's minds. The fact that I use a wheelchair and a powerchair and yet I am still able to walk is something that often leads to people calling me a liar, a benefit's scrounger, a fake, all sorts really. I only walk around my home but outside my house, the pain is too unbearable and from where I'm sitting this seems like a simple thing to understand, I just wish everyone could see things how I do. 

I suppose what I'd like people to remember is that not all young people are well and healthy, and not all disabilities are visible. If you saw me at home on a good day sitting down then I would look just like everyone else but what you don't see is the chronic pain, the endless list of medications and my struggle to even walk to the bathroom. It's not easy growing up with a genetic condition that affects every part of my body and everything I do but I've learnt to live with it, and it's part of me now. It's helped me to achieve things like working with charities to raise awareness and supporting others with my conditions; I might not have a university degree or have achieved some of my old goals but helping others makes me smile, and that's enough for me.

I'm so proud of Shona for sharing her story! I hope it has really informed you and opened your eyes about growing up as a disabled person. If you would like to write a post about something that affects young people's health and wellbeing, then don't hesitate to get in contact with me!

Thank you for reading, as always X

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