By Stevie Buckley
I am writing this in light of recent developments regarding people’s perceptions of you on social media. I want you to know that you’re not alone, and that there are some people that are similar to you, even if you think there aren’t.
There are people, as you know, claiming that you are making up your Ehlers-Danlos Syndrome (EDS) and that you only have Munchausen’s. I am in a similar situation to you regarding chronic illness. I have EDS and I know it is not the slightest bit fun. You find yourself waking up in the morning asking, “where will the worst pain be today?” and “which joint will dislocate next?”, which are things nobody ever wants to ask themselves.
With EDS, there are days that are better and days that are worse. Many of us only show our good days on social media and, in the rare occasion we show a bad day, we mainly do it to raise awareness. Unfortunately, only sharing our good days leads to people thinking that we are faking because we say we have a chronic illness and the only pictures people see of us are smiling and doing things – no pictures lying in bed crying with the pain or with support braces and/or canes or the likes.
There was also the whole debacle around people dragging you for coming out as queer. By the way, congratulations on coming out! I saw people on your Instagram asking why you have a boyfriend if you are queer. It must take all your energy (the little you have when you have EDS) to explain yourself to strangers. I’m not heterosexual either, believe it or not. Even though I’m not famous, I know that a good support network can work miracles. Your boyfriend obviously loves you for who you are, and you have plenty of fans that would be willing to support you.
Linking to the paragraphs regarding the Munchausen’s accusers and the coming out situation, another question nobody wants to ask themselves when they wake up is; “what will some troll try to pull me up on today?”, which must be exactly what you think every morning. I have no experiences of the trials and tribulations that come with fame but based on my experiences of bullying in my childhood and teenage years, I have found myself asking a similar question in the past. It isn’t fair (and never will be) that anyone has to ask themselves questions like that and it really takes its toll, especially on days when you have low mental reserves.
I really admire your work with the I Weigh Community. It’s amazing that you are working through all the drama and can push it aside to work on something that adds so much to the world. I admire that you are able to work on striving towards inclusivity and spreading positivity, despite the exclusion and negativity you face from haters on a day by day basis.
I don’t know why anyone would pick on such a talented, kind soul who has problems that don’t involve internet trolls. I don’t get why someone would accuse you of faking such a painful, destructive chronic illness and all the problems that come along with it. I hope that you will someday be accepted by the online community and that your pain will not be trivialised by those trolls who try to take you down.
From one zebra to another, I believe you.
Hope this finds you well,
A friend you’ve never met.