This year was my second HealtheVoices experience. For those that don’t know what this conference is designed for it’s to empower online health advocates. Chronically ill people who have a blog or social media presence about their journey with illness and advocating. This year was it’s 5th anniversary and the largest one yet with over 140 health advocates from 60 + conditions ranging from obesity to arthritis to cancer to schizophrenia, HIV to eating disorders to extremely rare conditions hardly anyone can pronounce let alone live with. It’s put on by Janssen Pharmaceuticals who is part of Johnson and Johnson. They sponsored this Canadian to go to Dallas Texas. It is a massive honor to go and represent arthritis.
1. My Voice Is Heard
I was invited by Healthline last year because I was apart of their Make It Visible Campaign, which I represented Arthritis. I was featured on their campaign along with other invisible conditions like endometriosis and bipolar disorder, the article which I wrote for them was also featured on The Huffington Post. It was my first big international feature and healing moment for me as I had only launched my blog 2 months prior to when they contacted me to be involved. That feature meant a lot to me, I had recently dropped a lot of weight and it felt good to feel like I was enough for something for one of the first times in my life, which is hard when chronic illness makes you feel like a burden a lot of the times. I started to believe in myself and my story matters, arthritis matters and people are listening to my voice. Healthline recently awarded my blog one of the top 7 Rheumatoid Arthritis blogs to follow, which is a massive honor.
I couldn’t be more grateful to those who are listening. Even if I am a weird tattooed single mother from Canada on disability. My disease often makes me feel invisible to others.
It was an great experience being on HealtheVoice’s radio podcast put on by IV advocates Robert Breining and Brady Dale from Poz I Am Radio.
2. Healing Experience For An Incurable Disease
I’ve thrived so much since my first experience at HealtheVoices. It showed me it’s ok to show your vulnerability. Hearing from other advocates, their stories, feeling their strength and positivity, no judgement or negativity. Seeing people be human, real and beautiful, all knowing we are stronger together and our little heart’s can do big things, even mine. There you feel a tremendous amount of love and hope. There is nothing wrong with me there when society tends to look the other way when you are ill with a disease cursed with stigma. It’s a sensory overloading experience which wold normally be very difficult and painful for an arthritic girl but the whole weekend goes by so fast because you are fueled by love and adrenaline the whole time. I was in desperate need of love.I only had one moment where I needed to miss out on something due to fatigue.
3.Fueling My Purpose
Because a little heart like mine can do big things. That was this year’s theme and now my years theme.
I am going to be on Breakfast Television Tuesday May 28th to talk about arthritis and promote the Walk For Arthritis on June 1st, which I am speaking at! Been a dream of mine to do this since becoming a patient advocate! I can’t believe how much HealtheVoices helped prepare me for this. One day I hope to share my story at HealtheVoices.
4.What I Learned, And From Who
I barely finished highschool and surprised I made it through beauty school, depression has always gotten in my way telling me I am not worth it, destined to fail. I will take any free education and experience like this I can get. I want to learn, advance my skills as a patient advocate and my writing skills, not just for my blog but the organizations I am involved in. I am a professional patient. My skills come from experience.
I learned to be more resilient and how I can add that into my advocacy. I learned that showing the human side to illness isn’t as scary as it seems, people are listening.
The sessions I took to further my advocacy were
Six Reasons Why Ephemeral Content is a Great Marketing Tool by Healthline
When Love and Gratitude isn’t Enough – Earning from Patient Leadership by WegoHealth
Chronically Creative: Creating Content That Will Fuel Your Mission by Inspire
5.The People I See, The Stories That Inspire Me, The Friendships I Make