Telling people about your M.E – which of the 5 Sharer Types are you?

By Jonathan Fitzgerald

When it comes to telling others about your M.E, have you taken out a peak-time advert on your regional radio station or does everyone just think you’re stuck in slow-mo or genetically linked to Eeyore?

I originally kept my M.E to myself. In fact, I even kept it from myself at one point! Admitting and accepting it is one hurdle but then explaining it to others is the next. If it’s true that only 250,000 people in the UK have M.E, this doesn’t help with a listener’s understanding. With some conditions, you can simply say you have it without either having to then explain what it actually is, or worry about stigma or misinterpretation. But should that be a deterrent if it will help you?

The idea for this blog came to my mind as I’ve recently jumped hurdles one and two – telling myself and then those closest to me. The next stage, I guess, is allowing others such as acquaintances and people at work to hear. None of these leaps are easy and some people may prefer to stop at different points for now, which got me to thinking about the different Sharer Types and whether or not it would be of benefit, with advice and support, to slowly start moving through these.

So – who have you told? Where are you on this Sharer Types scale?

Sharer Type 1: You haven’t even let yourself know yet… Maybe you’re reading this as you think you may have M.E or have recently been diagnosed but are trying to push through it rather than admit to yourself that you now have a ‘label’. You might have posted anonymously somewhere as part of initial exploration.

Sharer Type 2: You’ve admitted it to yourself and told one or two closest to you… Perhaps your partner or family know because they see you on a regular basis but you’ve kept it as tight as that. It’s private.

Sharer Type 3: You’ve told a few others who ‘need to know’… Maybe
the time has come to let your main friendship groups, wider family or a boss / colleague at work in on it, because it’s not something you can or want to hide any longer.

Sharer Type 4: You’ll allow anyone to find out now, as it comes up… You don’t really mind anybody knowing and have allowed wider circles to hear you have, and learn about, M.E. It might be because you’re relaxed about it now or you find it helps manage their expectations of you, but you’re not necessarily going out of your way to ensure they all know.

Sharer Type 5: You actively tell anyone and everyone, in fact you want people to know… Perhaps you find it helpful to know that people know, so they understand why you may act in a certain way or have obvious limitations. It might be cathartic or you might be looking for sympathy and support. You’re certainly raising awareness and reducing stigma!

Personally, at the time of writing, I’ve recently moved from Sharer Type 2 to Type 3. I’m just starting to think about number 4 if it will help. So which one are you – and are you comfortable there or are you looking for advice on how to move along the list?

My advice and thoughts, fresh from experiencing it myself, would be that if you’re Sharer Type 1, don’t feel bad about that as it’s a natural place to be – I certainly sat there for months, even years – but the sooner you move to Sharer Type 2, the more you’ll start on the road to dealing with it and the more support you’ll start to let in. If you’re already at number 2, and feel you maybe have a mild case and don’t need to take it any further, great! But don’t be afraid to let others in and move to Sharer Type 3. Although it’s hard to explain, it’s not impossible and some people may surprise you with the support and strength they can add to your armoury of coping. You might also not have to try so hard to hide it either.

Again, if you’re then happy to stick here, that may be no bad thing. In time, you might naturally feel like you want or don’t mind anyone knowing and become Sharer Type 4. You may not feel the need to explain yourself any more or you’d rather everyone has awareness of why you’ve been off work or not around as much, for example. You’re taking that one stage further if you’re Sharer Type 5; you’ve achieved complete acceptance and are quite an ambassador for M.E! You could find it hugely helpful to share – just be careful you’re not too full-on and it has the opposite effect of people being turned off by viewing you as attention-seeking. Maybe cancel that radio ad and Town Crier booking!

Extra reading: It can really help to share with like-minded, like-bodied strangers to start with. Search online/Facebook for virtual M.E groups and have a look here to see if there is a virtual or physical group near you.
And if you need help explaining M.E to people, have a look at these helpful analogies.

Over to you in the comments section – which type are you? Have I missed any? Would you like advice from readers on how to move from one to another or don’t you see any need? Please – share your thoughts below!