A friend was saying just the just the other day that they follow a weather expert on Twitter and he is amazing. Except that he is also a budgie breeder and every now and then he posts about his cute little birds. My friend finds these budgie posts annoying. The point they were making is that people who love weather find him fascinating, but they follow him for his keen knowledge and insights. They don’t follow him for his stupid budgies, and if he keeps posting budgie pics, they will dump him and follow someone else who posts about the weather. They may not be quite as good as this man, but at least the followers wouldn’t have to put up with the stupid bird pictures.
The assumption also, is that if someone follows him for his budgie photos, they would no doubt get sick of his stupid weather updates and insights. Does this mean that the only people who will stick to following him are budgie-loving-weather-watchers? A very small group by any measure. Does sharing both of his passions in the one public space not double his audience, but reduce it enormously?
In my experience, the answer is sadly yes. I have found this to be the case in my own social media space. There are people who love my writing and my books and follow me as an author, but the moment I post something about my health issues, they unfollow me. Health issues and particularly chronic illness and disability or mobility issues appear to make many people a little uncomfortable. There is nothing cute about chronic illness, so if people can’t even stick around for budgies, why on earth would they stick around for something that they fear, or are uncomfortable with?
But I AM a chronic illness sufferer. This is in many ways the most significant part of who I am. I don’t want it to be, and I would never choose it, but it is my reality. I want my writing and my art to trump my disability, but at the same time, I refuse to deny it’s existence. Being an advocate for health, diagnosis, and encouragement in truly difficult situations is part of my passion and my reason for being. I don’t want to deny that part of me.
It isn’t fair, but it is the way it is. For the most part, the people who follow me are that small group of budgie-weather folk, (except they are the author-disability folk), and hopefully, there are more of them than the former group. It isn’t fair that in yet another regard, my health issues restrict my ability to make a mark on the world. I feel bad that I have to rely so heavily on fellow spoonies to support me and share my art and my writing, sometimes I just want to be “normal” in the big bad world.
But there are a few very small silver linings. The handful of fans who are not of my chronic world who still follow and support me are such treasures that I may never have had the opportunity to know had a whole world of healthy people out there supported me as well. So they have become very special to me!
And the other silver lining is that the chronic community support myself and each other in ways that I think one would never get out there in the healthy world. Of this I am sure. You are a gift!
I wouldn’t trade my weather-budgie crowd for anything! (even though I really still hope to make it as an author an artist in my own right!)
Where you can find and follow Jennifer: