One morning in December 2017 everything changed for Dalainey Drakes.
Upon waking up, the 22-year-old found she couldn’t walk, or even stand, on her own without excruciating pain.
“I didn’t know what was wrong,” she said, recalling that moment. “My body was on fire and I needed my dad and brother’s assistance to hold me up as I couldn’t bear any weight without screaming.”
A devastating answer
It took months of self-advocating before getting a diagnosis of aggressive onset rheumatoid arthritis, or RA.
Doctors had not wanted to test Ms. Drakes because they felt she was too young to have the autoimmune disease, which more commonly hits between the ages of 30 and 60.
RA is caused when the body’s immune system is not working properly and mistakenly attacks its own healthy tissues, causing inflammation.
“I was faced with the reality that everything would now be put on hold.”
A chronic disease affecting the entire body, it can cause pain, stiffness, swelling and decreased movement of the joints.
If left untreated, it can cause irreversible damage.
“It was good to have an answer, but it was also very devastating,” she said. “I think most of us take our health for granted and I never thought I would wake up one day unable to enjoy some of the simplest things in life.
“I was 22 and applying to grad schools to pursue my dream of becoming a clinical psychologist, but suddenly was faced with the reality that everything would now be put on hold to embark on this unforeseen treatment journey with my health.”
Focusing on the positive
For nearly a year, Ms. Drakes underwent many treatments with little success, until her doctors finally found a combination that began to help.
During that time, she noticed a lack of opportunities for young adults with RA to connect and share their experiences.
She says that Facebook support groups were mostly negative, with most users “venting about the not-so-nice things” about RA. And while she faced them too, Ms. Drakes says she found it was challenging for her mental health to constantly focus on the negative aspects.
“What seemed to be missing was a place to connect with positivity while facing reality, so I founded my own page to bring this element to the community.”
Telling her own story
Ms. Drakes’ page, One Spoon at a Time, has grown to nearly 1,000 followers from around the world in just over a year.
The name comes from the spoon theory, a metaphor explaining the reduced amount of energy available to a person living with a chronic illness.
Ms. Drakes began by sharing original quotes from her personal journal but was encouraged by a follower who later became a friend to start telling her own story.
“I’m an open book in person, but sharing things publicly on the internet was a different level of vulnerability,” she said. “However, when I started sharing my own photos and reflections about my lived experiences, I began receiving messages from people saying I was putting into words the things they couldn’t explain to others. Now, my hope is that by sharing my journey, it will help someone else’s go a lot smoother.”
Her posts have covered her experiences and feelings about getting the RA diagnosis, smiling through chronic pain, grieving and learning how to adapt to life with an autoimmune condition.
She says that “nobody warns you” about the grieving that’s involved, or that it’s much more than just dealing with the physical pain.
“You learn to adapt to symptoms in some ways, but they don’t tell you how much you are going to miss the old you and the things you should limit yourself from doing as it may cause your condition to flare.
Ms. Drakes says the grieving never ends.
“It’s cyclical, because every so often you’ll run into something that makes you feel it all over again.”
Pursuing her dreams
In the fall of 2019, she began a master’s degree at Memorial in experimental psychology (health and wellness stream) in pursuit of her clinical psychology aspirations.
“I’m determined to not let RA define who I am.”
She is now developing a research project exploring the prevalence of anxiety and depression in those with RA across the lifespan and is co-supervised by Dr. Jonathan Fawcett, an assistant professor with the Faculty of Science’s Department of Psychology, and Dr. Emily Fawcett, an assistant professor with Memorial’s Student Wellness and Counselling Centre.
“It’s important to know how frequent mental health conditions are in patients with RA, because these conditions can impact your outcomes, disease activity, adherence to treatment and many other things that can make your experience with RA more agonizing,” said Ms. Drakes. “I’m also going to look whether there’s a difference in experience between younger adults and older adults.
“My lived experience with RA and the experience of the people I interact with online will bring something valuable to the field,” she added. “It’s interesting that I can move from finding my own personal motivation to cope with chronic conditions and sharing my experience while motivating others, to now looking at it from a science perspective.”
Ms. Drakes recently received the Peter Mackey Memorial Graduate Scholarship, which is awarded to a full-time graduate student with a disability.
“I didn’t know Peter Mackey personally, but I’ve heard our stories parallel one another,” she said. “As Peter did, I strive to improve the lives of those with chronic illness and raise awareness.
“It’s not all sunshine and rainbows. I’m not always my optimistic and cheery self. That’s just not realistic. I have my down days, too. But in the end, I’m determined to not let RA define who I am. It’s a mountain I continue to climb, and I am conquering it one spoon at a time.”
Mental Health Week runs May 4-10 in Canada.
