Dasha's Story - Arthritis Action

Dasha’s Story

My story began when I was at university at the age of just 19, after 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. As you can imagine this was quite stressful, especially at such a young age! Once I had the injection, however, everything immediately got better and I quickly forgot about the incident.

I had no further symptoms for the next few years. Then at 23, when I left university, the eye inflammation came back again. 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.

I also started experiencing side effects from the steroid eye drops, which left me with a difficult decision – do I keep treating the inflammation and risk long term consequences from the medicine’s side effects, or suffer through the eye pain? I chose to continue the treatment for the short term, and after around three years of on and off issues the inflammation finally began to calm down.

The doctors were very understanding and asked a lot of questions. However, 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.

A few years later, aged 26, I achieved a personal goal of mine by running a half marathon. After finishing, I felt a lot of pain around my hip. I initially thought this was just a side effect from my run, but it didn’t go away after a few days. I managed to get an x-ray to see if there was an issue, but nothing seemed to be wrong.

My diagnosis

I kept feeling the pain in my hip for some time. Some days were better than others, but the pain never completely disappeared. Eventually, I requested an MRI from my healthcare professional as it wasn’t getting any better. 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. I found it hard to accept, and immediately felt quite limited by my diagnosis.

The doctor told me quite casually, which meant I still had lots of questions. Could I still run a marathon as I was hoping to? How long before my mobility got worse? What could and couldn’t I do now? 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. I feel differently now that I’ve had time to accept it, but there was definitely a grieving period at the time of diagnosis.

Accepting my condition

I asked my doctor what the next steps were, and was told there was little I could do but just wait and tell them if it gets worse. I was registered with a rheumatologist and now knew the symptoms to look out for and who to speak to, but that was all the advice I was given.

Within a few weeks, perhaps because of the stress from the diagnosis or anxiety about developing symptoms, I began to go downhill quite quickly. Initially, all the doctor could do was give me ibuprofen to help manage the pain. Pretty soon I was taking 8 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.

Looking for next steps

The doctor told me the next step was to begin biologics, but he was quite reluctant as they didn’t know how serious my condition was. I tried to be proactive and argue that it was worth trying them now, before I deteriorated even further and couldn’t enjoy my life.

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.

By the end of 2020, I managed to begin biologics. Since then, things have only improved for me! 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. 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.

What I’d recommend

My advice to anyone receiving a diagnosis of arthritis would be to never stop looking for ways to feel better. Don’t accept that debilitating pain is your new, inescapable reality. That just isn’t true, and it can really affect your mental health if you spend time thinking this way. I didn’t accept it for myself, and I kept looking for new ways to treat my condition until I found something that worked for me.

Everyone I’ve spoken to has their own story about how they manage their condition. For some its eating healthily, or regularly exercising. For me, it was biologics. Everyone’s got their own story. There’s always something you can be doing to improve your situation. Talk to your healthcare professional and don’t give up!

I felt empowered by educating myself on arthritis and learning all that I could about my own body. It meant I could have informed discussions about how I was feeling and what was going on. You’re the best judge of how you’re feeling, so learn everything you can in order to tell others how you’re feeling and how they can help you.

Reaching out to charities and support groups is also incredibly beneficial. Groups like Arthritis Action and NASS, the National Axial Spondyloarthritis Society, gave me hope about my future and connected me with others who understood my issues. 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!