As I sat on the bus to my latest doctor appointments I looked over the advertisements, many usually health related campaigns or ads. Ever since I have entered patient advocacy world in November 2016 I have dreamed of pushing for an arthritis or invisible illness awareness campaigns like this in Canada.
Recently kinda fed up since sometimes I can't be involved in campaigns or receive funding since I am Canadian and there is a lot of competition for features. Inspired by my recent advocate success in the states with attending Healthevoices, 9 WEGO Health Awards nominations and my latest Healthline article, I know my voice is heard and needed.
If I am going to be the sick girl, I am going to kick ass at it. Right?
I want something I can stare at and be proud of in my country, something that would capture the attention of those who don't know much about arthritis while those who live with it feel slightly less alone when it comes to living with this complex disease. I think seeing something on transit would be a big impact. To be involved in that is one of my arthritic patient advocate dreams and goals. Being involved in the Healthline Make It Visible Campaign is the closest I've come to living dream and reaching that goal that so far.
But how do you get that in your own country, city?
Find ways to push for it, keep pushing for arthritis time of exposure. Think creatively. Be bold. Be myself. Use facts.
I decided to create some of my own arthritis awareness and reach as far as I could for help. Fear is the only thing that really stops me. And of course my lack of money as a chronically ill single mom on the number one cause disability in North America.
Raising funds and awareness is much much harder than I thought it would be for such a debilitating common disease, to my painful surprise.
Why does my disease have to be fatal?
For empathy, compassion and action from others who don't experience it.
I in absolutely no way mean to diminish the severity of any illness, I am however feeling the affects of that happening to my own severe illness and just how debilitating that can be for a number of reasons but especially as a patient advocate and ambassador for The Arthritis Society in Canada.
All diseases deserve their advocacy and awareness, I am however standing up for my disease that has some incredible stigmas behind it and it constantly over looked. There needs to be a change in how arthritis awareness is done and people need to start listening.
For a disease to be considered "sexy" means trending, feared, deadly and physically devastating. Also children become victim to it, and animals. This is what captures people's attention and sympathy. A chronic disease that isn't always fatal and described as joint pain and swelling with fatigue is a pretty vague term and is mostly associated with the elderly. Stigmas hurt.
I'm left confused because arthritis does effect animals, children, also can lead to death with some of the diseases and complications that arise with it. There is an extremely high rate of suicides among the chronically ill. Overdosing on medications, how many of those overdoses started off with chronic illness and a need for pain relief? There is even a higher rate of suicides among the elderly. Arthritis really does take lives in pieces. I could go on.
How I Am Doing It
Creating some arthritis awareness and taking things into my own small tattooed arthritic hands. Using the power of visuals, facts...the help of some friends and $78. Using myself.
Features... September is Arthritis Awareness Month In Canada
Even though arthritis happen everywhere in the world, I am Canadian so let's push it baby. I want to see something happen in my country for September's Arthritis Awareness month.
I've sent out some requests for help doing so with the biggest cheeses of cheese you can imagine in Canada, politicians and media of all sorts. Now if they even respond, whether that be a no to busy, no clue how to help or I've hit the nail right in the spot. You never know.
Kinda like my up coming feature in Inked Magazine who were down with featuring me when I contacted them and said I am tattooed arthritis advocate. It was a big step for me. As someone who's loved tattoos since I can remember I've dreamed of having myself in the magazine. My tattoos may not be finished but I can tell a story with my feature while creating some much needed awareness with your not so grandmas arthritis.
Sometimes they reach out to you, look out for me in a campaign for bones, joint and muscles in Reader's Digest across Canada in September. It will be in 66,000 waiting rooms across the country.
I am now collaborating with Arthritis Research Canada and their patient advisory board.