Contrary to public opinion, sharing aspects of my health on my personal social media platforms is not for attention. I can’t believe I even have to justify that, but I’m sure we all know that one person who criticizes us, says things behind our back or just give us that impression when we end up bumping into them.
The ironic thing is, is that those of us with chronic and invisible illnesses face so much stigma and judgement on a daily basis that the reason we share and post content is to break this and prevent it from happening. So if we aren’t able to comfortably share with people we know, then how will we ever?
When I was first poorly, I didn’t really want everyone knowing – not even people in my family. I don’t recall why, but I suspect it was the fact that my symptoms were related to poo, wee and periods. However, when I got my first diagnosis, I didn’t feel like I had to shy away from it and keep it a secret – maybe it was the fight and exhaustion of getting taken seriously that I wanted to “celebrate it”. This aside, I never felt like I couldn’t or shouldn’t talk about it and I was open – if people wanted to ask me questions that was fine. My only deal was that it was appropriate (and yes, there were times when it quite clearly wasn’t).
I never rubbed it in anybodies faces on my social media accounts though. At most I was sharing articles or other peoples posts relevant to Endometriosis and Interstitial Cystitis. As time went on and more diagnosis’ got added to the list, I shared content about them too. I started being more open on my Instagram account because I had less followers and less people that really knew me, and as the years have gone on I’ve actually been proud to talk about what is wrong with me.
However, I have faced backlash. I’ve mentioned before that I’ve received the odd unsettling comment on Facebook from support groups I interact with, or the odd comment from someone face-to-face where you can’t quite tell if you’re reading into what they are saying. And I totally get that everyone has very different opinions about sharing things on social media, but the point is is that there is their opinion and I am entitled to mine.
But during the course of my chronic illness and how they have played out, I have come to find two things – one being that there are things that I can’t quite be honest about on my personal pages and the second being that there were actually some things that I didn’t want certain people knowing. And for those reasons, Endo Bunny was created (you can follow my Instagram account here).
The sad thing is, is that I know plenty of people in the Chronic/Invisible Illness Community that have got two accounts – one that is personal (the account where they appear “well”) and one that is dedicated for health things. I don’t know why we can’t feel comfortable sharing on a personal platform, but it is a common theme. I have known so many people who have been judged, lost followers or even received nasty comments because they appear perfectly healthy in one account, but not in the other. It’s completely bonkers that we live in a world like that.
Creating Endo Bunny was the best thing I think I could have done. Being able to communicate, share and be honest among a fantastic group of people who are in a similar situation to you is incomparable. People are able to just get what you mean or what you are going through, and 99% of the time everything is positive. Being able to blog and write freely has undoubtedly helped me deal with the emotions and frustrations of being unwell 24/7.
Just 3 days ago, on Friday 12th October, I decided to share my main story – my Endometriosis story – on my personal Facebook page. This was an article I had written earlier that day (have a read!) but there was something about it that made me feel proud. I was also contacted by my best friend and encouraged to share it – she told me that although she had known me for many years and knew what I was going through, she never really understood it until she read my blog and this particular post was so inspiring. She told me to share it and let everyone see what I’d been through.
So I did.
Now, you might take a first glance at this and think that I got only a small number of likes, comments and shares, but it wasn’t about that at all. It was about letting people read and truly know what I have been through and still am. If no one had liked my post it wouldn’t have mattered at all – it was still out there for the world of Facebook to see. The only thing it did do was take the views from my website through the roof – like I’d never seen before!
I shared this article on my personal Facebook because I thought it was written in such a brutal and honest way that people would finally have some understanding. I received no negative comments, a number of beautiful messages of support to my phone, and the knowledge I’d done something for me. I can guarantee that more people read the article than liked my post – over 100 people like that article alone – so I know that I reached a good number of my Facebook friends.
Endo Bunny is growing, and I knew that I would have to break the personal barrier one day, and this was the best way to do it. Yes, I have only shared one part of my illness, but it is the main part, the one that is impacting my life the most and the one that I have biggest problem with. I’m even debating whether or not to share more articles on Facebook, but I don’t know if that’s the right thing to do. After all, my blog is in the public domain and you can have too much of a good thing. I also need to remind myself that I created Endo Bunny to have a separate environment away from my personal life, and that if the lines get too blurred then it won’t be effective.
Sharing my story on my personal Facebook was the best thing I have done so far with Endo Bunny, and I don’t regret it one bit. I didn’t need or want the attention, I just wanted to touch the hearts of my friends.
PS. if you wish to follow my personal Instragram or Facebook account, you’re more than welcome! My Facebook name is as above and my Instagram is @laurenemtugwell.