Why I Started #InjectWithMe Videos on Instagram
The phone rang. It was my rheumatologist. She had denied anything was even wrong with me to begin with, so I was taken aback when she diagnosed me with ankylosing spondylitis. She told me that in order to treat this disease I would need to inject a biologic medication.
I started to realize this would be a lifelong journey
She said the name of the specific brand she wanted me to take so quickly that I just jotted it down phonetically so I could do a little bit of research on my own later. The tone of that call made it seem as if this was just a simple fix for a simple issue, and as I dug a little further into my own research, I found out just how complex AS could be and that this would be a lifelong battle.
I was pretty quick to receive my medication and with a public health nurse by my side, I was walked through my first injection. I was terrified. I scaled the internet to try to find any information I could on how to inject, but I was left with demonstrations from decades ago using a plastic model to show how the injection was done. I went from being a relatively normal 29-year-old woman to now needing to give myself injections every week. I had nobody in my life who had experienced something like this.
I shared my videos, but they were met with silence
That’s when I decided: if I couldn’t find that information, I would be that information, and I started recording my injections. They weren’t well received on my personal platforms. I didn’t get any negative feedback, just silence, and I felt even more isolated than I did before for sharing such a vulnerable moment with no support.
So I built my own community and shared my videos with them
So yet again I decided if this wasn’t the community that I needed to support me I would have to build my own, and it didn’t take very long to see how many others were out there sharing their health struggles, too. One thing was missing: injection videos.
When I started uploading my injection videos to the Spoonie community I was inundated with comments, questions, and lovely support from so many other people who were experiencing The same feelings that I had the day I was rushed through my diagnosis. I created #InjectWithMe as a way to connect us all. It's for those who inject and to show support for the new Spoonies who are just entering the world of arthritis and aren’t sure where to turn.
Injections are nothing to be ashamed of!
These #InjectWithMe Videos have been away to really normalize the injection experience that so many people with chronic illness face on a daily weekly or monthly basis it has been so successful so far. Injections are absolutely nothing to be ashamed of and it’s so nice to feel supported. Join the campaign and use #InjectWithMe on Instagram!
Does reading AxSpA patient stories help you in your journey?