The Importance of Arthritis Advocacy in Canada

April three years ago my life was torn apart by a triple diagnosis of arthritis progressed. This April that triple diagnosis is making me thrive in ways I never imagined for myself.

Would I have volunteered for an arthritis charity before being diagnosed?

Probably not unless it was involved at school, work or an event I wanted to attend. Sadly people usually want something in return, that should never be the case when helping others less fortunate than yourself but people are often selfish before selfless. Disease changes people and their lives. I don’t like the person who I was before Arthritis but now I am proud to be me, adversity and all because I am one hell of a fighter and lately people have been describing me as a fierce advocate.

I’ve been nominated for and won some neat things lately, this one holds a ton of value to me and I hope to inspire others to volunteer and/or donate.

I was recognized by The Arthritis Society during National Volunteer Week April 15-21st 2018 where they showcased 5 volunteer profiles from across Canada.

For those who aren’t Canadian, that is the largest non-profit arthritis charity in Canada! That’s kind of a big deal, to me anyways.

These are some of the questions The Arthritis Society has asked me about my passionate role as a volunteer and ambassador.

1. Volunteers provide an invaluable service to charitable organizations. Can you tell us about what motivated you to start volunteering with the Arthritis Society?How long have you been volunteering with the Arthritis Society?

I was diagnosed with my first form of Arthritis, Rheumatoid Arthritis, in 2015. There I was a young single mom at age 29 with a toddler, now living with the number one cause of disability in Canada, in fact North America. I was shocked and crushed I could no longer work as an esthetician, my beloved career of 10 years. Even more so shocked that someone my age could get Arthritis. As my eyes were opened to what living with a painful chronic and invisible illness as I felt the frustrations of those that have been suffering long since my own diagnosis, I decided to raise my voice about it.

When I was struck with my second form of arthritis – osteoarthritis, a gofundme and benefit concert were held for me, many supported me but also many criticized me – a chronically ill single mother seeking help to treat her incurable illnesses and the pain to just lighten up, the pain was unreal.

I heard “it’s just arthritis” but I certainly felt the devastating toll just arthritis was taking over my body, my third form was still hidden until 2018; Fibromyalgia. Many were wrong about what arthritis really is, including myself. Those words hurt me when I was broken down from having my life torn apart by arthritis and introduced to the devastating mental health symptoms of the disease.

My aunt and grandmother suffered from this disease, I saw the critical comments they received during their misunderstood suffering as I grew up, now I felt how painful those judgmental remarks just really are. I never stood up for them, had I known sooner, I guess hell hath no fury like a woman scorned with three forms of arthritis. I do this in their memory.

My aunt passed away days before my initial diagnosis of Arthritis.

2. You have chosen to do advocacy work for the organization including letter writing and awareness campaigns. Can you describe your volunteer engagement as an advocate for the organization?

I was inspired to write to each Premier of the country and Mister Trudeau himself after another ambassador told me he got a politician to donate to his Walk for Arthritis page last year. I enjoy writing, it is something I can do while being a busy single mother and the chronic pain and fatigue associated with Arthritis. I was surprised to receive some responses, that won’t be the first time they hear from me. Arthritis hurt me and tore my life in pieces, I am not very athletic thanks to arthritis but I am inspired by Terry Fox and Rick Hansen to leave an arthritic footprint in Canadian history, as difficult as that is in 2018 and on.

3. Is there a special moment or day that stands out for you in your role as a volunteer? Can you describe that for me?

I would have to say being on TV was particularly neat for me. I’ve never been on TV before, I was so nervous. It was during one of my rather difficult times so I felt a sense of accomplishment and empowerment that I could do something so important while on disability. I was amused how much the host liked my tattoos and the next time someone tells me those were a bad idea, well I have a good example for them! You can’t always judge a book by it’s cover! Arthritis is an invisible illness.

4. Why is advocacy so important for the Arthritis Society?

Patient driven stories are what really drives people. I share mine in hopes to create awareness for The Arthritis Society because advertisement isn’t cheap, none of the disease charity competition is easy, free and when your disease has such a debilitating stigma behind it then it’s up to those who live with it to speak up, even to healthcare professionals. None of it is free and there’s so many other diseases or causes infiltrating media and social media. Where do you even begin?

5. Why should someone support the Arthritis Society?

Because they are severely underfunded for the amount of Canadians living with the disease or who don’t even know they are because of lack of knowledge about the illness. While the diseases may not always be fatal they still have a devastating chronic toll on someone’s life, including as young as a child. That is an entire lifetime with an illness, that alone is costly for the government, the tax payers, and the patient. Arthritis doesn’t just effect the elderly, it effects 1 in 5 Canadians. As someone living with three forms, this disease is incredibly painful and debilitating. I felt a panic to relieve my pain when I was first introduce and slowly processing this pain is with me for the rest of my life, I was 29.

6. What is it you gain personally from working as a volunteer?

I do this because I have experienced the devastating toll that arthritis has on one’s life. Being able to say internationally known published blogger, patient advocate and ambassador for the Arthritis Society instead of focusing on the fact I am disabled is a gift I am going to be forever grateful for, no matter what happens to me down the road. It helps repair part of the broken heart arthritis created in me losing the ability to work and knowing I can still give it my all – even through arthritis and depression. You can be more than your disability, every small arthritic step of your own way. It has helped me rediscover my passion for writing, even though it hurts.

7. Does volunteering with the Arthritis Society make you feel connected, a member of a community? If so, how important is that?

I always noticed disease awareness campaigns before, never knowing what goes on behind the scenes and never imagined myself being apart of it but it has helped me significantly with the depression and isolation that is involved with chronic illness and disability. After my writing was inspiring many people who knew how hard I was fighting this disease I decided to take it further and become an Ambassador with The Arthritis Society, in hopes to help break the stigma that is debilitating Arthritis. Helping others even through my own suffering has helped put some solitude to the pain of this disease.

8. Is there any message you would like to leave with anyone who might be considering a volunteer role with The Arthritis Society?

Do it. Arthritis needs it’s time in the spotlight, million Canadians are afflicted by this disease. It’s up to us to take charge and erase the stigma that is debilitating arthritis. Yes, it can be quite invisible to others but you have a voice, use it. The Arthritis Society is a great step to take in beginning that process of becoming a self advocate for your own health.