By anonymous writer for the EULAR Edgar Stene Prize essay competition, runner-up in the UK national competition
Pain is not something that anyone wants. Chronic illness will rob so much of a person that often, we are only able to see it as stealing from life. For myself, I will never seek to deny the anguish of the first years of my illness with rheumatoid arthritis. I was a shadow, hiding in the corners and trying to find a way out of myself. The relentless severity of the pain, the ungainly shuffling and wincing, the nights with no rest and mornings void of freshness.
But through all the difficulty, something positive happened in me – my experience of hope was recalibrated.
My rheumatoid arthritis arrived with my first child, kicking and screaming and impossible to ignore. The road to diagnosis was longer than it should have been, hindered by lack of understanding from GPs and a slow referral system. By the time I saw a specialist, I had no energy and my joints smarted at the lightest touch. I could barely lift my baby. My mind also felt completely out of control. I needed an anchor.
I will never forget the compassion of that first doctor I saw, Dr S. I could sense her keenness to get me on medication as soon as possible, but she was gentle with me. I was desperate to have another child. Although looking back, becoming pregnant in that state of health would have been a bad idea, it was still such a painful dream to let go of. On the other hand, I knew it was more important to try and get better for the wonderful child I did have – I struggled to hold him, change his nappies or push his pram.
I saw Dr S for the first time a week before Christmas, and the tree and school choir in the hospital foyer drew emotional tears as my husband and I walked slowly back to the car. My feet were full of glass, my head heavy with exhaustion, but I held in my hand a ticket out, the crumpled post-it Dr S had written her direct phone line on. “Call me, any time before Christmas eve. If I am not here, tell my secretary that you have decided you will try the methotrexate and I will make sure it is here for you at the pharmacy the next day.”
On Christmas Eve, I made the call, and made peace with myself. The painful decision to start this drug that meant no pregnancies, for now and perhaps forever, was made sweeter by the compassion I was shown by that doctor. She left the hospital for a consultant role soon after. But she treated me like a person, whose hopes mattered, whose disappointment held weight.
It took a while, but it was a wonder when the drugs kicked in. Although my time on methotrexate was not without issues, it calmed the inflammation and I was able to do many of the everyday things I had taken for granted before. It is no exaggeration to say that walking to the shops felt like an event – an unwarranted treat. My hopes had been transformed – they no longer centred on the things I desired but became rooted in what I had been given back. So many things laid to rest in that dark year were returned to me.
And eventually, a sibling for my little boy came along. There is not a day of my life that I am not grateful for those drugs that brought me back to health and made me ready to grab hold of the hopes I had let go of years before. Another dark time followed the arrival of my daughter, but this time round I had the knowledge that I had been here before. I was more able to believe there was a way out.
Around this time, I was assigned a new consultant, another compassionate person who saw my needs and respected my priorities. I started taking etanercept, which has kept me afloat ever since. When I occasionally miss a dose because of an infection, symptoms begin to creep back immediately, and I am reminded of what this drug has given me over the past five years. I am not allowed to forget, but I wouldn’t want to.
Through the ups and downs of flares and treatment, I have also had the luxury of friends and family who want to be there for me, who want to share the burden. Helping other people understand is hard – finding language to describe the depths of exhaustion and pain feels impossible at times. How the pain physically feels and what it does to my brain are not easy for me to articulate. But it has been worth the effort to try and give my experience words. The language that my husband and I have found together feels special, betraying the deep connection that has grown between us, catalysed by my rheumatoid arthritis.
I have never been one for big dreams of the future but finding treatment that works for my disease has lifted the lid on my expectations. Small things don’t feel small anymore – I have brought my garden to life and am able to crouch on the carpet with my kids. I have a new job which I love, and I am excited that I do not know where my path will lead next. I can believe that there is more for me than just getting through.
The rights of the past are now gifts to be cherished. I hope I will never lose the ability to be grateful for things that our society sees as ordinary. Hope for me, has been transformed.
*ARMA does not recommend any specific medicines or medical treatments. People with musculoskeletal conditions should research and decide with their clinician on the best treatments for them.