When Kelowna resident Danielle Downs was 11-years-old she loved playing soccer. But it was pursuing that passion that she encountered what was to be a life-long struggle.
After diving for a ball she broke a wrist, and it never healed. Then both of her wrists became sore and swollen. Both knees followed within a couple of weeks.
Downs said she was a “tough kid” and couldn’t understanding what was going on in her body.
“There was a lot going on, and my family had to travel quite a bit in order to see specialists,” Downs said.
“What was happening to my body was not logical, and I had many difficult emotions; yet wanted to keep them inside. I wanted to be OK for the people around me.”
Being OK was impossible because she was soon to be diagnosed with juvenile idiopathic arthritis.
“I was taking multiple drugs simultaneously … had a standing order for blood tests, and relied heavily on Prednisone in order to move,” she said. “My mom recalls that some nights I was so sore that I had to sleep with a stool over my body and a blanket draped over the stool — I couldn’t bear the weight of the blanket on me, it was that painful.”
Downs had to give up a lot of the comforts she once knew, but she was determined and didn’t want to give up playing sports.
She had to wear braces during any athletics, but found that she was still getting stiffer, so stopped wearing them at night. Fridays meant three injections of various medications – that was how she started every weekend.
“It was a struggle to not do too much, and there was stubbornness and resilience in me, yet the pain was still so loud,” she said.
“I wasn’t able to actually do the things that I wanted to, which was challenging for many reasons, including the fact that my family had always taught that you set your goals, and then you go do them. It couldn’t be simply mind over matter anymore. It felt like my body was calling the shots.”
Her family and friends were all supportive, but even they couldn’t understand the highs and lows of the conditions or things like how she’d be OK one day, and in pain and fatigued the next.
Time marched on and Downs graduated high school and then went to Okanagan College in Salmon Arm.
There she met anther young women there who was also living with a chronic illness and their common issues bonded them.
“When she died suddenly from a stroke, I was devastated,” said Downs. “It affected my life in a huge way. My boyfriend at the time lived in Edmonton, so I moved there to be with him, and to take a year off school, and work. In these late teen years, I started to listen less and less to what the doctors were telling me and I kept a lot inside. It was a very difficult time for me, but I wanted to keep it together for everyone.”
A year and a half after that, Downs applied to UBC Okanagan, and moved to Kelowna.
“I refocused on valuing what my rheumatologist advised, and advocated for what my body needed,” she said. “ And then something else revealed itself to me… I realized that I didn’t trust myself.”
Emotional and physical strain took its toll and Downs grades slipped and she became depressed, sleeping up to 18 hours a day. For a time she moved back in with family in Salmon Arm.
In time, however, she moved through her difficulties.
She was introduced to a meditation and healing arts studio, and began to cultivate a daily meditation practice. At first, meditation was a way to help control her pain.
“It did even more, however as it softened my entire approach to my body,” she said. “I learned that I didn’t have to identify with this ‘broken thing’ and that it was possible not to judge my body for being the way it was.”
Now 28, she is newly married, living and working in the Kelowna community, is active, and still practices meditation. It provided the calm in the storm, and has become a meaningful companion on Downs’s journey with arthritis.
She is walking in the Kelowna Walk to Fight Arthritis on June 4, and invites you to join her on this leg of her journey.
She, and many others, are walking for those who cannot, and to help raise funds for research to help improve the lives of people with arthritis.
Over 650,000 people in British Columbia live with arthritis, and it can affect anyone at any time, regardless of age, ethnicity or gender. And just like Danielle, kids get it too.
The Arthritis Society is holding the Walk to Fight Arthritis in six locations around the province on June 4, and everyone is welcome to participate in this family friendly community event. To find out more, or to donate to Danielle and her team, Movers and Shakers, please visit walktofightarthritis.ca