Dasha is urging other people to speak up for their health and not just “accept that debilitating pain is your new reality”
Arthritis is a common condition encompassing over 100 different variants that triggers joint pain, inflammation and stiffness. While typically associated with older age, it can affect people of any age according to Arthritis Action – something one woman only discovered when she received her diagnosis at 27.
Speaking to Arthritis Action, Dasha revealed that her first noticeable symptom started when she was 19, but doctors couldn’t determine the cause for years. She explained: “I woke up one morning with an inflamed red left eye.
“At first I just assumed it wasn’t anything serious, but it quickly became very painful and I realised it needed to be looked at. I was seen by a healthcare professional who couldn’t confirm what had caused it or why it had happened. I was given some steroid eye drops which helped a little, and was offered an injection into my eye.”
Following the treatment, her eye improved and Dasha swiftly continued with her life, dismissing the episode until it occurred once more years later after finishing university. She continued: “This time I quickly recognised what was happening and went to the hospital believing it could be easily sorted again, but the issue simply wouldn’t go away. Each time I finished a course of treatment, the symptoms would just reappear.”
The steroid eye drops were now also triggering side effects making it harder to stick to. After three years of on-and-off use, the inflammation finally started to calm down but doctors were still baffled.
She said: “As I wasn’t experiencing any other symptoms, they weren’t able to diagnose the underlying issue. It felt very disheartening to have these ongoing problems and to have no idea why it was happening, or when it would end.”
At 26, Dasha celebrated a major personal milestone as she completed her first half marathon but this triggered some severe pain in her hip. She initially wrote it off as a result of the race, but after days of pain Dasha requested an x-ray and when that showed nothing she pushed for an MRI, determined to get to the bottom of this.
She said: “They immediately saw that the cause of my hip pain and eye problems had been a form of arthritis all along, called Axial Spondyloarthritis. Only at this point, seven years after my first symptoms, was I diagnosed – and only then because I had pushed a doctor to book me in for an MRI. If I hadn’t asked, I could have gone on for years without actually finding the root cause of my symptoms.
“Many people say that getting a diagnosis is a relief, but this definitely wasn’t the case for me. At the time, it felt more like a sentencing. It felt like I was immediately being told I wouldn’t be able to do the things I aspired to as an average 27-year-old.”
Looking back now, Dasha insists her life didn’t stop after the diagnosis but admits she had a “grieving period” following the devastating news. Her journey was only just beginning though as treatment often becomes a trial-and-error process to discover what works for each individual patient.
Dasha’s health also began to decline during this time: “Initially, all the doctor could do was give me ibuprofen to help manage the pain. Pretty soon I was taking eight tablets a day to try and manage the pain, but even then it didn’t subside. I would wake up feeling stiff, and the pain kept me awake all night.
“Exercise became painful to the point where I could barely run. Everything felt limited, and there was no end in sight. All I was being told was to ride it out and see what happens. It was very hard on my mental health.”
One of the most widespread and successful treatments is biologics, a type of medication created from living cells, but Dasha’s doctor was hesitant to prescribe it because he “didn’t know how serious my condition was”. By the end of 2020, Dasha was finally able to commence the treatment and has improved so dramatically she’s returned to running.
She said: “There’s no magic bullet for everyone – all drugs have side effects, and there are always risks involved – but it’s been such a life changer to find the right support that works for me and my condition.
“I attended a few meetings and groups with other people living with Axial Spondyloarthritis, which really helped me come to terms with my condition and improve my mental health. It made a huge difference to meet others coping with the same condition and who were living well. Many of them were ahead of me in their journey and could share their own experiences and advice. They normalised what felt scary and unknown beforehand.
“I still have pain sometimes, but it’s nowhere near the pain I was feeling before. When I was younger I could run 5k without a problem, but after my diagnosis I would feel pain for days if I did this. Since beginning biologics, I can easily run 7k and feel completely fine afterwards.”
Dasha has been telling her story to help other young people with arthritis feel more empowered. She pleaded: “Don’t accept that debilitating pain is your new, inescapable reality.
“Having a condition like arthritis is really lonely – my friends try to relate and empathise, but they don’t know how it actually feels. Having that group of like-minded people to share my experiences with and talk through that journey of grief and acceptance was such a game changer.
“This is a lifelong condition. I’ve found a place where I’m comfortable and can accept my condition. I don’t know what’s going to happen in the future, but I do know that if anything happens then I’m ready to deal with it. I’ve learnt that no matter what happens, my condition won’t define me. I can deal with it!”.