Diana’s Story

Difficult road to diagnosis

In 2018 aged 34, I had an odd incident while typing on my laptop, I found my fingers wouldn’t move properly. It passed and I dismissed it and later it was fine, but this continued, intermittently. By Christmas, my hands had become very painful and just stopped working.

I had seen my GP who had initially been sceptical, talking of aches and pains. A different GP ordered blood tests, and the results lead to a hospital referral.  I was given DMARDs (disease-modifying anti-rhematic drugs) to start on, but it was the beginning of a whole stressful year before getting an official diagnosis. I had many different scans in that first year in particular.

Over this time, my hands had become useless, and life had become very difficult. This was a year of self-funding carers, and I couldn’t get any state support as I didn’t have a diagnosis. The condition affected me a lot, I wasn’t able to do even simple things such as wash, dress or take a bath. Over time, I saw six or seven different rheumatologists; some were dismissive, saying that my symptoms were mental health related – that was really frustrating! It wasn’t until an ultrasound detected the presence of rheumatoid arthritis, that things felt like they were moving forward.

Looking back, that first year was definitely the worst; the stress of the condition, the toll on my mental health, feeling dismissed by medical professionals, not knowing what it was or what would help. All the things that might have helped me de-stress; the gym, knitting, baking I just couldn’t do.

“So, diagnosis was a relief, and a weight lifted as I could begin to plan. A name, a treatment and the proper support put in place.”

A steroid injection made a difference almost overnight, and stronger DMARDs were issued. Nine months of relief followed, no carers; life returned to normal.

Unfortunately, over time, the treatment stopped working, I was moved on to a biologic and then a second one.. My medical team are still adjusting my treatment, and I am waiting to see if a third biologic will be the answer.

My life has changed so much, planning even day to day things is difficult – stuff other people take for granted, like meeting a friend for coffee.

Finding Support

At the moment, I have daily carers to help with dressing, washing up etc. I know the limits of my mobility in walking and use these to walk my dog around the park, and opt for  my mobility scooter for further journeys. Stairs are an issue, and when planning to visit unknown places I must think about accessibility, which isn’t always easy. Despite wanting  to maintain my independence, I mainly stay within a 2 mile radius of my home and places I know.

My condition has changed my perspective on life and plans. It has inspired my interest in further studies, completing a degree in Medical Humanities and a special interest in disability studies. I’m now hoping to do a PhD in the area. Studying has been something that has filled my days with purpose. My university has been incredibly helpful and supportive in ensuring I have full access to my course despite my disabilities. The Disabled Student Allowance provides money to suppliers for special equipment such as a headset, voice recognition software, taxis to classes and a note-taker for my lectures.

I am grateful to have found the Arthritis Action Groups, which have been incredibly supportive. Prior to my diagnosis I hadn’t met anyone else my age with arthritis, so it was quite isolating.

Talking with those in similar situations provides social and practical support. Whether it is sharing tips about gadgets – I now have special cups, a hairdryer stand and dog lead amongst others – or therapies and treatments.

My friends (including another wheelchair-user) have been helpful and the university support staff too. My family were brilliant during the first year in particular, helping finance carer support – which I would have been lost without.

The long-term future is uncertain, so I tend to focus on the day-to-day. The things I can control, pacing myself, eating well (within the limits of what preparations I can do), keeping moving but knowing when to rest.  Finding the comfort in my pet dog, the intellectual challenge of my studies and the support I have around me.