For two years I have been telling the world my story with autoimmune arthritis through this blog and as an advocate.
At first I didn’t expect anyone to listen. I was even told it’s been done, no one cares, no one will listen, it’s after all, just arthritis.
But I’ve shown that arthritis is more than what meets the eye. Invisible illnesses are all around us and to think twice before you judge a book by it’s cover and I’ve done this now internationally. This has given me a large sense of purpose after disability tore my self worth apart.
I was terrified I would be mocked or maybe even locked up for expressing my vulnerability but I’ve since learned it was the most rewarding and beautiful thing I could do. The self growth and awareness writing has given me while letting thousands across the world know they are not alone in their battle with not just arthritis but various types of chronic illness has been rewarding for myself and my chronic illness community.
It feels so good knowing someome out there is listening.
My Most Read Posts
How I Explain Rheumatoid Arthritis To Those Who Don’t Have It and Don’t Get It
Although you can read a better edited version on Creaky Joints now.
What I Noticed After 8 Weeks of Exercise
Arthritis Brings Out The Bitch In Me
Creaky Joints now has a great article about my moods and emotions with Rheumatoid Arthritis.
Why I Do This
To help others, to inspire others, to give others hope and to educate those about arthritis and chronic illness. It is my cathartic way to fight back to illness and the whirlwind of thoughts and emotions that come along with it. Writing helps me make sense of life and myself, it has helped me grow and given me a whole new perspective of self awareness in just two years. To keep moving forward. To keep my brain exercised. To fight arthritis.
And because cognitive dysfunction is real and if I write it down I have a better chance of remembering it.
What I’ve done in two years and where I’ve gone!
Over the last two years I’ve done a lot of rewarding things because I decided to express my vulnerability and now I can say now that I get paid to complain on the internet! Great career at 33!
I’ve been published on Healthline, become an active writer for Creaky Joints, several pieces on The Mighty to writing for the seasonal newsletter for Arthritis Research Canada. I’ve been interviewed by reporters/journalists from CBC News, Chatelaine, Reader’s Digest who’ve found my blog. I was featured in Inked Magazine. I also get to say fancy things like my blog has been recognized as one of the best arthritis blogs to follow by Everyday Health and Healthline.
Guess who has great interview skills now and knows how to really tell her story?
I was invited to attend the 2018 Chicago and 2019 Dallas HealtheVoices conferences where I met many editors, patients and truly inspiring individuals and received a wealth of knowledge from respectable organizations like twitter, youtube, WEGOHealth, Healthline, Helthcentral, etc..
I’ve found many different avenues to use my personal story to create awareness for arthritis and hopefully inspiring others to live a happier and healthier life. Since joining the arthritis patient advisory board of Arthritis Research Canada I’ve grown an interest in research behind arthritis and the importance of involving patients.
How is blogging difficult with arthritis?
There are a couple things I have wanted to express that some may not think of, blogging, writing, living and breathing with arthritis is difficult and always painful with that thick cloud of fatigue to get in our ways. I still live with disease, particularly in my hands which can flare if I get too carried away on the computer.
I get cognitive dysfunction, my back is killing me as anyone who works on a computer would say the same thing. I am disabled. I have my limitations. I also have weird social anxiety from prior years of online bullying or fatigue leaves me with no clue what to say half the time and that social anxiety makes me think I am always saying the wrong thing while fatigue is leaving me with forgetting what to say.
I have a 6 year old who often interrupts my thoughts and then they are gone forever. He’s too cute to get mad at though.
I also sometimes need to tap into some very dark memories and places again to write what I have to say. This can be very emotionally exhausting and take time to come out of.
My advice to those who ask me how to get into patient advocacy.
Connect with your local or national organizations to volunteer or if they have an opportunity to share your story, your voice does matter. Ask specialists like your rheumatologist or rheumatology nurse, arthritis centers, if they know local organizations you can participate in patient oriented research. Check with local universities. Attend your local fundraising and awareness events like walks or galas. We are stronger together.