Thanks for letting me join the community
Hello!
I have lived with juvenile enthesitis-related arthritis since I was 13 years old, and have undergone 8 complex surgeries over the last 5 years as a result. I am on a range of different immunomodulatory medications but still have active disease that can be tricky to manage physically and mentally. My condition has caused substantial functional impairment, particularly affecting my upper limbs, but I am fortunate to receive supports through the NDIS. However, I have struggled with incorporating arthritis into my identity and have resisted recognising my disability. I am slowly learning to accept that this is not a weakness, rather that managing pain and the determination required to continue to train and race as a state level competitive swimmer is a real strength.
I am really proud that I managed to complete my medical degree and graduate as a doctor in December last year. It was an extremely difficult uphill battle getting to this point, with many people (mostly the medical school) working against me and not supportive of reasonable adjustments and people with chronic health issues and disabilities. However, I managed to prove them wrong and show them that my experience is a gift as it gives me a unique insight into the patient experience. I did decide to delay beginning work due to some health complications, but turns out to have been a very good decision as I have since needed 2 more surgeries and there is a pandemic that would have put me at serious risk working on the frontline as a doctor. Also, it gave me the opportunity to do further study through the Master of Cancer Sciences, as I am really interested in pursuing oncology and palliative care as a career.
My experience as a patient has often been isolating, never meeting anyone with my condition and many doctors and other healthcare professionals not even knowing what juvenile arthritis is, or assuming it's the same as adult-onset rheumatoid arthritis. I'm looking forward to connecting people that really understand what it's like to live and cope with conditions like mine.
Comments
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Hello @graceh237 and welcome to our online community!
What an amazing life you've led so far - I'm full of admiration for your determination to overcome the challenges that juvenile arthritis has presented you and to achieve so much in your life.
It sounds like you are not from the UK - do you live in USA or Canada? Wherever you are from, I'm sure you will be a real asset to the community and be able to offer support and encouragement to our many members. I'm sure you'll also find people who understand what it's like to live and thrive with arthritis with whom you can share experiences.
You don't say how old you are but it sounds like you are in your 20's. If that's the case, you might be interested in our Young People's forum, where you'll find more like-minded people. Here's the link if you want to have a browse and introduce yourself there:
All the best, Anna
Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm
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Having Googled NDIS I think you are from "down under". Really impressed that you have battled though and qualified as a Doctor. I am full of admiration for you, WELL DONE.
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