Parveen says being open about her rheumatoid arthritis is key02 June 2021
Parveen, 30, is the marketing manager at a technology company. She wishes she’d been more vocal when first diagnosed with rheumatoid arthritis (RA) five years ago, and today she tells us why being open about her health has given her a sense of freedom to pursue what she wants in life.
“What’s going on? Am I sleeping on my hands?”
These were my first thoughts when I started waking up to swelling in my fingers and wrists. I had this sense of urgency because of stiffness and slight deformities in my fingers. I wanted to get it sorted as soon as possible.
My GP told me to see if painkillers helped but I knew there was something more serious going on. I decided to see a private specialist through my company at the time and after a blood test they diagnosed me with RA.
“It was a punch in the stomach.”
Already being a type 1 diabetic, it was disheartening to think I had yet another condition.
I was put on methotrexate to reduce inflammation and control the arthritis. It didn’t seem to make much of a difference, in fact I started feeling worse. The next few months were intense, I began getting flare ups in different parts of my body on and off. I went to bed not knowing which joint would be affected in the morning. It was scary.
I remember once I’d gone to see a friend who had a Labrador puppy and he brushed past me, moving my hand quite quickly. I cannot describe the pain this caused in my wrist, it was like someone had hit me with a tennis racket.
That was one of my lowest points.
“I have my whole life ahead of me, so I focused on looking for a way to get back on track.”
I was 25, just starting my career, thinking about how this was going to impact me for the rest of my life. It was crazy but I had no time to get upset.
I pushed to see a specialist on the NHS who offered me a place on a medical trial. I would continue taking methotrexate and start infusions of rituximab, sitting in hospital for four to five hours every six months. I wanted to continue moving forward in my life and career, so I went ahead with it. Now I’m down to almost one or two flares a year. It was the best decision I ever made.
“Growing up and having different priorities has helped me change the way I think about my conditions.”
I hid my diabetes during my time as a student, I was embarrassed of it. Not much changed when I was diagnosed with RA. Diabetes and arthritis are often associated with old age and I didn’t want to seem different. I felt like RA was just another thing I’d have to explain to people. I’ve always hated doing that.
I was constantly worried that people thought I was no fun. Being in your 20s is when you normally have the most freedom. I didn’t want to be the boring girl who couldn’t do things because of her health. So, most of the time, I’d either make excuses to not go out or go out and not talk about the pain.
The only person I spoke about things with was my now-boyfriend, Sanj. He made me feel really comfortable, so I slowly opened up about what I was going through.
Now I’m past all that and at an age where the most important thing for me is work-life balance, my career, and mine and Sanj’s future. I realise that having an illness is so commonplace and no longer see my conditions as taking away from what I can achieve.
“Communicating how you’re feeling is key.”
I’m lucky to have found the right treatment for me. But whatever happens, I will consistently need to communicate with my medical team to keep things under control. I don’t know whether the infusions will work forever, and if I have to stop them for pregnancy I don’t know if they’ll work again afterwards.
This is always a worry at the back of my mind. I never want to go back to how it was before.
“You ultimately don’t know what you’ll wake up to.”
Thankfully the rituximab gets rid of most of my flare ups, but I definitely still live with the effects of RA and taking medication.
Sunday has always been my methotrexate day and it makes me feel really tired for days afterwards. It makes me feel very dehydrated, which means I have dry skin, dry eyes and sometimes a persistent cough. My friends and family always talk about my cough that lasts for months!
I’ll also feel pain or fatigue directly as a result of stress. So if I’m having a tough day at work I know that this might trigger flare ups.
“It’s a mind game. If you’re excited about something in the day, you won’t focus on the symptoms.”
Finding things to look forward to and ways to relieve stress really helps me.
My spin bike is my favourite thing. It doesn’t impact my joints that much and it’s nice to enjoy something physical. I also make time to feel positive mentally around friends and family.
I strongly believe that life is too short to focus on things you can’t control. After years of thinking about what everyone else thinks of me, I’m now focusing on what I think and how I can live my best life. My RA has driven me to be the best I can be in everything I do.
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