Written by Jasmine Davey, 07 September
No need to live in shame and silence: telling your story openly will help both you and others live with the condition, writes Jasmine Davey
My name is Jasmine, I am 21 years old and have lived with juvenile idiopathic arthritis since I was aged one. Because I was diagnosed with a musculoskeletal (MSK) condition at such a young age I had to learn to adapt to my condition in all aspects of life when I was growing up - whether through school, getting a job and going to work, or simply wanting to go out with friends.
Living with arthritis hasn’t always been an easy journey, and having a chronic illness can be daunting and can often feel lonely at times - which is exactly why I would like to share my experiences to help others cope better.
With arthritis, each patient has different experiences; different joints are affected; individuals respond differently to medication or even different pain sensations. Talking openly about your condition can be intimidating, but for me personally, being honest with people is how I have coped with living with arthritis and how I've gained the best possible support bubble.
Throughout school and now university, being open with teachers and disability teams has been invaluable and has provided me with aids and equipment for support while continuing my education. I am currently studying a master's degree in pharmacy, which involves a lot of revising, sitting for long hours, and keeping my head in a book. Having arthritis isn't ideal when needing to sit for hours on end because joints can often become stiff and painful, which can contribute to flare-ups.
But at university I was provided with equipment such as a foot stool and a rise- and- recline chair which enables me to keep somewhat mobile during long revision periods, and prevents stiffening of the joints. I’ve also used a book rest and laptop rest which keeps books and /work at eye-level and prevents any neck pain as my head can remain in a natural position. Equipment such as this has massively helped me and allows me to revise for longer periods of time than I would previously have been able to - it would also be super useful for the current global situation in which many people with arthritis may be working from home.
Opening Up About Arthritis Can Be Scary – But It's Worth it
Autoimmune diseases are "invisible" and often some of the symptoms which come with arthritis can go unrecognised. Flare-ups can often mean that attendance at school, university or work can be lower than that of non-sufferers but it is often unavoidable. Throughout school and university I have always had lower attendance than my peers, so I often rely upon technology to bring myself up to speed with everyone else. There have been many times where I have struggled with flare-ups and feel as though I cannot write for long periods of time, so I have recently been using a device on my laptop which allows book chapters, essays and so on to be read out loud and also a recording device to use in lectures (with permission) for times when I feel as though I cannot make the necessary notes quickly enough. Simple things like this I have found to be extremely helpful and they takes a lot of pressure off me to keep up with others, while managing the condition better.
I have also been working with Versus Arthritis as a member of their youth advisory panel for almost a year, which has encouraged me to use my voice to help other people living with the same condition. The panel members and I work with Versus Arthritis to help reach and provide support to young people living with arthritis, offering advice and our own tips which we have all learnt by coping with the condition. Speaking out about living with arthritis and sharing my story has improved my confidence and allowed me to achieve to the best of my abilities.
Living with a chronic illness is tough and can be scary at times, but it has also taught me great determination and perseverance. I am a stronger person because of my condition than I would be without it. But the most important thing I have learnt about living with arthritis is to pace yourself, talk to people and be open about your condition and how you’re feeling. By doing this, your family, friends, peers and colleagues can become more educated about arthritis and understand how it can affect day-to-day life.
So try talking to the appropriate people in your school, university or workplace, or charities such as Versus Arthritis and Arthr which can help by providing or advising on innovations to manage your condition. It may be daunting, but talking helps to provide the best support for your condition in whichever form that may be.
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