The Arthritis NewsletterWinter 2018
Why me? This can’t be happening: I’m not even old!
Regaining balance after an arthritis diagnosis
Kelly English is the co-chair of Arthritis Research Canada’s Patient Advisory Board. She was diagnosed with rheumatoid arthritis (RA) 23 years ago and it took a strong support team to help her regain balance and quality of life.
But she wants other people with arthritis to know that they don’t just have to survive. They can thrive.
Can you describe the process of being diagnosed with RA?
It has been a journey of ups and downs since the day I first noticed symptoms.
Looking back, I remember fearing the unknown as I waited for my first rheumatology appointment. Why was my body hurting and swelling? And then the official label came: RA. It was a hard pill to swallow.
I was scared. I was angry. I was a little depressed. And I was hurting so badly.
The fatigue was overwhelming and there were so many appointments, opinions and things to work on.
In the early days, I kept saying, “Why me? I’m not even old! What is this disease and how can it do so many horrible things?”
If you could offer a piece of advice to those people who have just found out they have arthritis, what would you say?
My rheumatologist said we would hit the disease hard with medications and try to get a quick handle on it. But I knew that wouldn’t be enough, so I assembled a support team.
My social worker helped me with stress management and I found great strength in family and peers on the internet – people who also had RA. I also relied on my friends – the ones who stuck by me and understood.
My occupational therapist and physiotherapist were my new heroes. I learned that I had to keep my body moving even when it hurt. I did range of motion exercises and found different ways to do things. I used tools so I could continue a little gardening.
My pharmacist was my go-to person whenever I had side effects (and there were many). When I needed reassurance that I was taking everything as I should, when I should and with the right supplements he/she was a godsend. Pharmacists are incredible resources that sometimes get overlooked.
My family doctor was my main gatekeeper – sending me to every specialist you could imagine on the road to treating the whole me.
My rheumatologist was my sword – helping me attack the disease.
I also found solace in knowledge. I educated myself to break the cycle of pain and depression.
How are you doing now?
I guess you could say, I am thriving with arthritis.
The road has been long and continues today. I still go through the cycle of hurting, being scared and feeling depressed from time to time. And I still ask, “Why me?” But the skills I have acquired enable me to break the cycle quickly.
I recently went through a very scary episode with a medication, but my support team was behind me. This time, the cycle was very short. Armed with support and knowledge, I told myself, “I can overcome this.”
I’ve now turned my personal journey with RA into advocacy for others with different forms of arthritis. I volunteer with Arthritis Research Canada. In fact, I’ve been a member of the organization’s Arthritis Patient Advisory Board since 2013.
We are a group of volunteer advocates with arthritis, who bring personal experience and arthritis knowledge to research decision-making at Arthritis Research Canada. Our goal is to ensure the patient perspective is represented on research matters related to prevention, treatment, and self-management of arthritis. Individually and collectively, we communicate research information and findings to arthritis patients, professional organizations and the general public.
Many people probably don’t realize it, but arthritis researchers are also members of every patient’s treatment team. They operate quietly in the background – finding answers and developing new treatments to make life better. Being on the Arthritis Patient Advisory Board allows me to contribute to this important work.
I also help with the planning of the annual Reaching Out with Arthritis Research public education forum and in some case, my involvement is as a study participant.
My journey may not be over for a while. I still have much to experience and learn, but hopefully due to my incredible and always growing team, the road I walk will get easier. If you are new to this journey, I hope you are able to find a few takeaways through my experience. Or if you are looking for a way to connect with arthritis research in a more personal way, perhaps you will consider joining Arthritis Research Canada’s Patient Advisory Board? In either case, thank you for reading and giving me the opportunity to share my story with you.