Active youngster learned to live with arthritis
Kelowna Walk to Fight Arthritis takes place on Sunday
Danielle Downs was an active 11-year-old, and had a real talent for soccer. As a goalie, she relied on her reflexes to catch what was coming at her, and to make the save. But after diving for a ball during a game, she realized something was wrong.
What at first was thought to be a broken wrist, never healed. Suddenly, it was both of her wrists that became sore and swollen, and then both knees within a couple of weeks.
Referring to herself as a “tough kid”, Danielle had trouble 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. 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.”
Danielle was diagnosed with juvenile ideopathic arthritis (JIA). And so her journey with arthritis began. “My diagnosis made me determined because of the element of someone telling you you can’t do something. I was taking multiple drugs simultaneously at 11 years old, had a standing order for blood tests, and relied heavily on Prednisone in order to move. 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.”
Danielle 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. This was her reality at 16.
“It was a struggle to not do too much, and there was stubbornness and resilience in me, yet the pain was still so loud.
“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.
“My brother, family and friends were all supportive, but it was hard to explain the inconsistency in how I would be feeling OK one day, and in pain and fatigued the next.
“It was difficult for them to understand why I couldn’t do things and would often have to cancel plans. After high school graduation, I attended Okanagan College in Salmon Arm. I was very close a girl there who was also living with chronic illness.
“When she died suddenly from a stroke, I was devastated. 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 later, Danielle applied to UBC Okanagan, and moved back to Kelowna. “I refocused on valuing what my rheumatologist advised, and advocated for what my body needed. And then something else revealed itself to me … I realized that I didn’t trust myself. I felt that I couldn’t trust my own body because it was attacking itself, and after a negative relationship back in Kelowna, I felt hesitant to even trust my mind.
“Emotional stressors, coupled with side effects from a medication, led me to flare up. Physical activity stopped, my grades started to go down, and I became depressed. I would often sleep for 18 hours a day. I nearly stopped going to school.
“It took a long time to get out of that dark period in my life. Although it was hard for my family and friends to see me struggling, they never gave up on me. For a time, I moved back home to Salmon Arm to take away some of the pressure of living on my own. With a chronic condition, you have very limited energy, so I chose to ask for help with simple things like making dinner and running errands, so that I would have the energy to keep working on my health.
“In Kelowna, I 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 my pain. It did even more, however as it softened my entire approach to my body. 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, Danielle is newly married, living and working in Kelowna, is active, and still practices meditation. It provided the calm in the storm, and has become a meaningful companion on Danielle’s journey with arthritis.
Danielle is walking in the Kelowna Walk to Fight Arthritis on Sunday 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. And like Danielle, kids get it too.
The walk begins at 10 a.m. at the Rotary Centre for the Arts. Registration at 8:30 a.m.
To find out more, or to donate to Danielle and her team, Movers and Shakers, visit walktofightarthritis.ca.