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2020/04/23 Living with rheumatoid arthritis: Lisa’s story
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Lisa was a typical 19-year-old university student, when she suddenly started experiencing excessive pain and stiffness that made it difficult for her to even get out of bed. Lisa spoke to us about the impact of living with rheumatoid arthritis, which she describes as an often invisible disease:
What was your route to a diagnosis of rheumatoid arthritis (RA)?
I was like every happy-go-lucky university student, until I started experiencing pain and stiffness in my joints that began to interfere with my studies and my day-to-day life as a student. At first my family and I put it down to growing pains and I didn’t rush to see the doctor straight away. Unfortunately, my pain and mobility issues just kept getting worse and worse. Because I was so young it took many visits to different doctors over a 6-month period to finally find out what was causing my symptoms, by which point my condition had really deteriorated. Blood tests confirmed I had a positive Rheumatoid factor which was the first indication that I likely had an autoimmune condition called rheumatoid arthritis (RA). Further tests confirmed this was the case. It came as a huge shock to my family and I, as we had no family history of the disease and we simply didn’t realize it could affect someone as young as me.
Why do you describe RA as an invisible disease?
On the outside, a lot of the time, there are no physical signs that I am unwell and to most people I seem like a typical, healthy woman. Because of that, I’ve experienced a lot of misunderstanding from people and a lack of empathy when I’m having a severe flare-up. People mindlessly say things all the time like “oh, you look fine”, which can invalidate the pain and suffering I’ve had to endure over the years. It’s a really isolating experience, particularly when you are only 19 and have to watch your peers live carefree and without limitations, while you’re struggling to get out of bed in the morning.

People often mistake RA for osteoarthritis, which is the type of arthritis that people tend to develop when they are older, so people assume it can’t be that serious. RA is very different to osteoarthritis and it can affect people of any age. I’ve found it to be very unpredictable and aggressive.
Were there any turning points in your journey with RA?
At the beginning my condition deteriorated very rapidly and it was a huge blow to my confidence - I struggled with my mental health. The flare-ups were totally unpredictable and debilitating at that stage. However, I remember very distinctly my General Practitioner (GP) saying to me that I had an important choice to make – either I take control of my RA, or I let it control me. Since that day I’ve worked tirelessly, alongside my doctors and dedicated nurses, on both my mindset and management of my physical symptoms.

Samsung Bioepis has been in conversation with patients as part of our ongoing commitment to put patients at the heart of our business. We believe that by listening to our patients we can better meet their needs, now and in the future. To hear more of Lisa’s story or from other patients, follow our Twitter and LinkedIn.

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