Writing my future - How Arthritis Care has inspired me to achieve

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Niamh was diagnosed with hypermobility syndrome at age 16. She tells her story of how the condition has affected her through education, how she has been supported by Arthritis Care and what's next.

One day I was running, jumping, catching and throwing, the next I was struggling to walk. At fifteen years old I went from playing netball and tennis to sitting in waiting rooms and seeing countless doctors. At age sixteen I was diagnosed with Hypermobility Syndrome, which means my joints are more flexible than a “normal person's” and causes pain.  Now eighteen I have been dealing with this condition for three years. The dislocations, the subluxations, the weakness and the pain.

Support in my education

This all started in the first year of my GCSEs. I’m now in the final year of my A-Levels and my education has been impacted. For all my GCSEs I got special consideration marking, meaning I got a few extra marks added on to compensate for the pain. Nevertheless, I ended up doing really well in my GCSEs and now I’m studying for my A-Level exams (Psychology, English and Art). Although it is difficult my sixth form have been extremely accommodating and have offered any support I may need. I can do half days so I can go home and rest, equally they are understanding about my attendance and teachers email me the work I need. Socially I know I can’t do everything my friends can but then again, they are really understanding of that. They’ve even snuck out of sixth form and sat in A&E with me, when my wrist wouldn’t go back into place, with a picnic!

Finding Arthritis Care

My first event with Arthritis Care was in November 2016 through the young people and family service. It was a pain management workshop and since then I have gone to many more, including university days and residentials. All of the events have been amazing and I have grown in confidence massively. They have given me more of a positive outlook and increased my resilience as well as providing me with so much useful information. I have made friends with people who I now talk to daily and there is something so special about talking to others who just “get it”.

Moving forward and going to university

One event that stands out to me was the university day. We had talks from the disability and dyslexia team at London Metropolitan University, as well as being given a lot of helpful information, for example when to disclose our health condition and who can help us. Before this event I had no knowledge about going to university with a long-term health condition but this event made me feel more at ease about going and applying. I would really recommend it to anyone who is even considering going to university as it is so beneficial.

Applying to university has been a massive part of my life over the past few months and after attending the university day I felt much more confident in applying. I have applied, completed interviews and been offered places at five universities to study Journalism starting in September 2018. I decided on this course after noticing that what I write can have a positive impact on others, inspire and help them. This was all through my blog which I set up in December 2016 and is to do with my health, lifestyle and fashion. At the end of my degree I want to go into fashion journalism. I think if I didn’t develop the conditions I have now, I wouldn’t be the person I am today and without the help of Arthritis Care, I wouldn’t have the confidence or amount of information to pursue what I want to do.

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