I’m glad I was finally able to get the care I needed — even if it took a life changing diagnosis to get me there.
Growing up through the 1990s and early 2000s, when mental health was not often discussed and usually met with more stigma and misconceptions than it is today, I was always ashamed of how I felt inside.
I knew I was struggling at a young age, but when I spoke of my emotions and suspected depression, I was often met with more harmful advice and dismissive responses.
“Just be positive. Be happy. You have no reason to be sad. You are so young. Don’t be so negative. Stop being so dramatic. It’s all in your head. Don’t be so crazy.”
The list could go on.
Like many others, I was taught to repress my emotions.
Instead of seeking the treatment I needed, I hid my problems in shame, resulting in them chipping away at parts of my life in dramatic ways, until they burst at the seams.
Not knowing what I was going through and why I was in so much pain for so long had a drastic impact on my well-being. I had a hard time being heard about my symptoms, especially with them being invisible to others.
I was diagnosed with rheumatoid arthritis (RA) in my late 20s. Finding out that my chronic pain was being caused by an incurable autoimmune disease at such a young age was devastating.
It was only natural that along with my physical health, my mental health took a major hit.
Early on in my diagnosis, I intensely struggled to control my emotions. The grieving process of a chronic illness diagnosis was one of the most difficult things I have ever had to go through. I sunk into a depression worse than any I had experienced before.
For the first few years, I was constantly jumping between hopelessness, anger, sadness, desperation, guilt, and denial. In my darkest times, I thought I would never feel joy again because of the impact that RA was having on my life.
Often, these uncomfortable feelings were heightened when those around me did not understand what I was going through, or I was met with misconceptions and stigmas around my illness.
Even though I had the diagnosis from a specialist, I felt like I was an imposter. Others kept saying I was too young for arthritis, that I didn’t “look” sick, or that arthritis wasn’t anything more than a little joint pain. If all of that was true, then why did I feel so horrible?
I had to say goodbye to a lot of things I loved doing, and to people who were once close to me because they were unsupportive about my health.
Chronic illness came with a lot of heartbreak and loss continues to happen throughout my journey with progressive RA and natural aging.
Even though my invisible symptoms often leave me feeling alone and misunderstood,
Anxiety and depression contribute to pain, fatigue, disability, nonadherence to medications, and poorer outcomes. Patients living with persistent anxiety and depression typically also have higher disease activity and less of a chance of reaching clinical remission with RA, explains Susan Bartlett, PhD, a research scientist at Arthritis Research Canada.
“Decades of research shows that emotional distress is associated with worse pain, disability, and sleep disturbance, even after controlling for RA disease activity,” she says. “So it can become a vicious cycle when you feel bad physically, which worsens RA symptoms.”
“But living with these symptoms and with the uncertainty of RA over time — and dealing with healthcare systems — can also lead to depression,” she adds.
My mental and physical health got a lot better when my rheumatologist recognized I was struggling with depression and referred me to a psychiatrist and clinical social worker for the care I needed. Asking for help was one of the best things I have ever done.
Since doing so, I have been able to develop self-management and coping skills for when my emotions and physical health get difficult to function with.
I discovered I wasn’t alone in how I was feeling or what I was experiencing. I went on medication that helped me control my emotions. I discovered my triggers and can act fast instead of letting things fester.
Much of what I do for my RA is also good for my mental health. This includes:
- getting regular physical activity
- eating a low-inflammatory diet
- getting enough sleep
- practicing self-love and self-care
- taking my medications
- reaching out for help
- finding community
- practicing therapeutic hobbies, such as gardening, painting, writing, and cooking
While I’m grateful that there’s less stigma around talking about mental health now than there was when I was growing up, we still have a long way to go. I’m glad I was finally able to get the care I needed — even if it took an RA diagnosis to get me there.
Many people, unfortunately, still feel shame and stigma around sharing their struggles. If this is you, remember that RA doesn’t just require joint care.
It can be hard to ask for help — but it might just change your life.
Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver, British Columbia, Canada. She’s an ambassador for the Arthritis Society, an Arthritis Research Canada arthritis patient advisory board member, a member of the Doctors of BC Shared Care Chronic Pain Advisory Committee, and a patient engagement research ambassador for the Canadian Institutes of Health Research — Institute for Musculoskeletal Health and Arthritis. She’s a regular contributor to Creaky Joints and runs her personal blog, Chronic Eileen. When she’s not advocating or busy being a single mother to her young son, Jacob, she can be found exercising, painting, or cooking.