Although my Twitter feed is full of great, astoundingly talented people with M.E., the nature of some social media discussions inconsiderately uses up a disproportionate amount of valuable energy which I would rather be using for discussing interesting things like new research, pharmacy, etc., which would be much more constructive.
As a pharmacist, I have a professional Code of Conduct, Ethics & Performance. This also applies online and in my spare time. Sometimes I think people take advantage of this and see it as a vulnerability. I expect people to be fair, polite and respectful of my health and experiences as a person with M.E. I have PTSD from my 25 years of mistreatment. If something is upsetting I will have to come out of the discussion to look after myself.
From now on, I will be enforcing this more strictly, with zero tolerance for harassment and I will block with no warning and I have a right to do that to look after myself and make sure I can do my voluntary work. I’m quite tolerant really but I won’t be used as a punch bag.
It doesn’t make a lot of sense to get blocked because then the person will be unable to contribute to my work with their views and experiences. I have to stop working for a few days each time this happens and it’s got to the point where it’s so frequent that I haven’t done much at all for the past few weeks. So that’s not clever, it’s pretty selfish. Twitter isn’t a game. There are real people behind the accounts.
Are people really helping others with M.E. by being vicious to volunteers and bringing people with M.E. into disrepute? We have a stereotype – don’t reinforce it by behaving badly. Twitter is a public place and when we tweet we represent all of us. Think about what tweets look like to others. I, and other volunteers and the charities, have to work hard to get people with M.E. respected and have to do a lot of negotiating to get what people with M.E. need. I know people are angry. I’m extremely angry too, believe me, I so am (read my M.E. story here if you’re feeling the need to tell me what it’s like), but all the work is undone by trolling these organisations such as the NHS accounts on Twitter. I get doubly angry when people trash our chances of negotiating and working with these organisations. Revenge-harassment might be satisfying and make the perpetrator feel better for a short while but it’s damaging to our reputation and scuppers progress, and is therefore damaging to all of us with M.E. in the long run.
Here’s a bit about the things I find difficult online which I expect to be respected and they’re just manners really:
Don’t tell me I can’t have M.E. because…
There are several levels of symptoms and they can fluctuate, so saying someone can’t have M.E. because they’re not as bad as you ignores the fact they probably have been at some point. Quite a lot of us have had these comments and it feeds into the story of our lives because it’s like not being believed again and I’m sure we’ve all had enough of that!
Don’t rant at me as if I don’t know what M.E. is like.
We compare notes a lot about problems we’ve had and what our lives are like because of M.E. and it’s good to chat to people who understand but ranting at me as if it’s my fault or as if you think I don’t understand doesn’t achieve anything other than being really upsetting for me.
Please bear in mind that I’ve had M.E. for 24 years. You can assume from that I have been through all the levels of the illness, several times and there have been some pretty traumatic things happen over and over again as a result. Yes I know people with M.E. commit suicide. I don’t need telling this. You should know that I know what it’s like. I’m sure we have all been through traumatic things – no need to be angry at me about it. We should be kind and respectful of each other instead.
Please don’t blast me with tweets.
Sending multiple tweets in quick succession when it wasn’t possible to fit it all within one tweet is obviously OK because the 140 character limit is hard work cognitively. Continually blasting me with tweets without giving me time to respond before sending more and doing this repeatedly, however, feels aggressive and disrespectful of my M.E. We all have to be careful with our spoons and I have bad cognitive problems which are made much worse by this kind of tweeting.
No personal attacks just because we don’t agree on something or if my experience doesn’t match yours.
Don’t encourage others to troll or harass me. That’s as bad, if not worse, than trolling me yourself.
Please don’t DM me unless it’s for a friendly personal chat or if I’ve asked for a piece of information.
I’ll leave you with this. Creds to my mate for sending me this to make me laugh exactly when I needed to.
A Prescription for M.E. 
I heartily endorse all you say. Solidarity in suffering is the way to go, and a positive attitude to creating a better future for those with such a poorly understood and debilitating chronic condition.
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You really have analysed the damage (and collateral damage) caused by trolling so well. This is a sobering read, and I’ll link to it, when people say there is no trolling, or indeed, that trolling doesn’t matter. Thank you.
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Thank you, Cathy, there certainly needs to be more care taken with how people campaign for change. In my experience of other campaigns, acting in the opposite way to how people expect us to makes people sit up and listen more, as well as gaining some much needed respect.
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Emily – firstly, I wish you well, and am so sorry that you have experienced such debilitating abuse online. You make some really good points about the need to think, and remember how public online comments are, and how important it is for people, when (very understandably) angry, to not feed into the wrong and damaging perception of PWME as “vexatious” and so-forth.
You are absolutely right in saying that there are real people behind Twitter accounts.
I am in no way excusing bad online behaviour, but sadly, I think that given the circumstances in which ME/CFS has been grossly misrepresented for so many years by the behavioural psych. crew, despite decades of good biomedical research and great international conferences such as those held by Invest in ME, it may be inevitable that some people simply lose their rag and, in the heat of the moment, neglect to think before they post. The knowledge that real, scientific, biomedical evidence is, and has been, willfully ignored by those in the medical establishment with the greatest power, is desperately frustrating. Regarding basic manners – as you say, of course these should be used online. I also hope that the influential psych. lobby will show some basic manners to those with ME/CFS and stop peddling their worn out theories of deconditioning and faulty illness beliefs ad infinitum. (Releasing the full PACE trial data as requested by the ICO would be a good start !)
I’m so sorry you feel you have been used as a punch-bag, and can only hope that very, very soon, the whole concept of ME/CFS as “controversial”, or “medically unexplained”, will be laid to rest once and for all, and that respect, informed understanding, and good biomedical treatments will be afforded to all PWME, just as they are with other severe and chronic illnesses.
Look after yourself, and thank you. (Sorry this was so long!)
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