Happy Monday, followers and readers! Over the weekend, did you turn to a particular online support group for advice? Or did you join in a conversation on a Facebook and Instagram account? And at any time, did you feel like you were not appreciated, or that your advice was not considered, or even face some unpleasant comments in return?
Unfortunately, I’ve found that online support groups or accounts can be a place full of negativity and competitiveness and actually, it is very rare that I’ll comment or post something in them because I’ve seen the comments that people post and how they make other people feel.
I’ve previously written about the importance of a support group – be it online or in person – both here on Endobunny and on Do You Endo. But after speaking to my fellow Spoonies, and seeing the comments that people post, I felt it is important to highlight the “darker side” of these online support networks because a lot of people turn to them when they are in need, only to be turned away or receive no help.
What I’ve found is that the negativity that occurs in these supports tends to be one of these things – competitiveness and ignorance.
There was one particular Facebook group that I came across and became a member of that was notorious for it. I won’t name any names in case any of you find the group really useful and you get a lot of support from it. I never posted anything in the group, but found that it was so strictly moderated with regards the content of posts, posts would be deleted. There was also a real superiority between Facebook users who had had specific surgery or been operated by specific surgeons – anyone who had experienced anything else were immediately pushed to the side and it made aware that their views or experiences were not relevant.
That one group aside, as I scroll through my Facebook news feed, I spot so many comments in other groups that are made by people who assume they know best and their experience is the only one that matters. For example, the most common stems around the diagnosis of Endometriosis (we all know this is only ever diagnosed by a laparoscopy, but sometimes someone brand new to the concept of Endometriosis might know) – anyone who has been given a diagnosis or idea of having Endometriosis without this operation get sidelined and told to “immediately switch consultants” or “do their research before posting”. I think that’s so awful – you never know the reason behind someone not being able to have a laparoscopy or why their diagnosis hasn’t been confirmed.
Another common one is surrounding hysterectomies. At the weekend, I commented on a Facebook post from a user who just wanted a simple answer to a questions. All they appeared to be getting was other peoples emotions or experience, not an answer. And I knew the answer, because it was related to the workings of the NHS and current clinical practice. So I commented, and advised that the content of my post was just what I was aware of but I hoped it helped. I had even put it into context by giving a bit of my background with Endometriosis and Adenomyosis, and how I was having a hysterectomy as soon as my family was complete.
And do you know what happened? I then got a string of comments from another user advising me how I should know that a hysterectomy wouldn’t cure my Endometriosis, and that I needed to find an accredited Endometriosis specialist center because that would be the only way I would get any help and get a hysterectomy. I was also “advised” that Adenomyosis can now be diagnosed by ultrasound and that the laparscopy I had was old practice, hence the need for a specialist center.
It really annoyed me, because this person didn’t need to jump on my comment (or even the jump on the original post at all!), and it clearly assumed that I was stupid. I went against my better judgement and replied. A simple and short reply explaining that I was already under an accredited Endometriosis specialist center, and that I knew a hysterectomy didn’t cure Endometriosis, but I was having a hysterectomy for other reasons. This worked, because I then got a really lovely and pleasant reply back.
The best part? This persons didn’t even have Endometriosis.
And if it wound me up just from a little comment that I really could of ignored, then imagine what it must feel like to someone feeling alone and desperate? The simple fact that you can get comments like this make me avoid posting on Facebook support groups in particular, because they are so open and public anyone can join in.
Now, the other thing I have mentioned is the competitiveness of members of support groups, and this is easily spotted across pretty much any online forum or social media. There seems to be an unknown competition surrounding who is the most sick, who has had the most surgery or who has the worst disease. This isn’t about people sharing their experiences or opinions, it literally people telling others that their disease is worse or their symptoms are worse. Absolutely mad. I have never experienced this directly, but I have had comments made off the back of me working – something along the lines of if I am managing to work then my symptoms can’t be as bad as everyone else’s are.
Support groups are supposed to be a place where people can connect and share experiences and ask as many questions as they like, but they are also a place where a selective few do anything but support. And it turns it into such a bad environment. I’ve seen people leave support groups – even posting in them that they are doing so and the reasons why, but nothing seems to come of it.
So a little word of warning for those of you who are new to the online community or are thinking of posting something – take comments or responses with a pinch of salt. If someone says something that upsets you are isn’t what you were expecting, then you don’t have to reply – you can even report them or block them. For everyone one persons commenting that negative stuff, there are hundreds if not thousands of others who are willing to help in a heartbeat.
And if you are someone who makes comments or posts that are negative, competitive or knowingly upset someone, just think about what it would be like if it was you. Chronic illness is not a competition and there are so many variations in standards and protocols for diseases, even with NHS NICE Guidelines, that what you may think is right, someone else’s consultant might not.