How much should we share on Social Media?

May 31, 2017 7:47 am

This is something that I’m sure many of you will have thought about at some point. How much should we actually share on social media? Should we share the good stuff? The bad days? The bits in between? How much should we filter?

My friend Carly and I were chatting about this exact topic today after I posted something on Instagram this morning that triggered a few different thoughts for me.  I thought I’d open up the conversation here and chat about it a bit more as I have a feeling some of you will relate to my experience and I’d be interested to hear your thoughts and own perspectives too.

Last night, I went to see one of my favourite bands and this morning, I posted some videos and a couple of photos on my personal  Instagram account from my evening. To most people, this wouldn’t really be a big deal, certainly not something that would be given much thought. However, when you have an illness that fluctuates like crazy, and you post a photo/video of yourself having a lovely time and looking fairly well it can lead to you having a few thoughts swirling round your head wondering what other people might think, it certainly did for me this morning.

There is so much misunderstanding around ME/CFS (which I’ve written about before here and here) and being totally honest? I can understand why. The bad days, and weeks and months, are so hidden, and what people generally see are the better times. The good days.

People are affected so differently by this illness, some bedridden, some mildly affected and some on an upward curve towards recovery. Some people have times where they fluctuate. I’ve been at all sorts of levels over the seventeen years I have lived with ME/CFS, but am currently fluctuating quite a lot. I’m grateful for this, despite the feeling of uncertainty that comes alongside it, as I know how awful it is to feel like things aren’t shifting at all. I’ve been in that place many times and it’s a really tough place to navigate through.

What comes with the current fluctuation stage I seem to be in, is that I can go from being barely able to open my eyes or sit up and in severe discomfort (last week in a crash) to being able to go to a gig (last night) in a short space of time. I understand why this happens, because I understand whats going on on a biochemical cellular level, but many people who don’t understand the physiology of ME/CFS could be quite confused at how such vast fluctuations can happen.

The issue with social media is that it doesn’t show the full picture. Take my photos of the gig for example, they show a smiley face and a lovely evening, but they don’t show the challenging weeks before. Or the hours spent in bed resting on the day of the concert. Or the payback that may come after. Which can all lead to confusion and people thinking ‘but you seemed fine on that photo?!’ when I explain I have to pace myself so can’t meet up for that coffee this week, or that I’ve crashed back down yet again and am back being unable to leave the house.

I am so lucky in that my friends are incredibly supportive and know me and my situation well, but it doesn’t mean I don’t sometimes feel a bit…how do I even put it? Like I have to explain myself I guess, when they message asking if we can make plans after they may have seen a social media post of me looking much better and I reply saying I’m actually not up to making plans. It’s such a confusing thing to live with and can actually feel a bit embarrassing at times if I am totally honest.

My own personal Instagram feed shows predominantly good days and happy times and pretty things, yet this doesn’t feel like a true representation of the bigger part of my life at all. But does that mean I want to start posting photos of my poorly days? No, I don’t actually. But the consequence of this, is that Instagram really does become a highlight reel. 

I think this is the case for many people isn’t it? The highlight reel thing. Social media never gives the full story of someones life and I think this is something we should all remember for many reasons.

Most of the time I like my Instagram feed looking all cheerful and lovely, it’s kind of like a photo album really isn’t it? You wouldn’t put a depressing photo in a photo album. This is how I choose to use my personal Instagram account. The Consciously Healthy account shares more of my healing journey, but I still like to choose pretty photos. As for Facebook – I don’t really use that platform as much these days, it feels a bit messy and energy draining, but when I do use it, I guess I post a mix of things. It’s funny how the various branches of social Media have a different feel to them isn’t it?

In terms of the ME/CFS/invisible illness thing, I guess whats important is that we do our best to let go of what other people might think and focus first and foremost on our own health and happiness, enjoying what we can and making sure we soak up those good moments when they come along.

Carly and I decided at the end of our chat, that actually, other peoples opinions aren’t ours to carry around, that we choose to let go of worrying about it as much as we can. No one will every fully understand unless they are extremely close to us – and thats okay. Our friendship is great in this respect as we both totally get where each other are at and can have these lovely soulful chats that allow any worries and thoughts like this very topic to be expressed.

The question still remains, how much is good to share on social media? Do we post photos of the absolutely awful horrendous days to raise awareness and give a clear picture? Do we not share our good days at all, because of the misconceptions?

My thoughts on this at the moment, are that everyone is different. As long as we are sharing what feels true to us and right for us, then thats what matters.

I also think, when it comes to the good days, it would be such a shame to not share them when they come along. It’s nice for people to see them, and its nice for us to look back and see them too isn’t it.

Emma x 

P.S Take That were amazing and I had a great time. So, so soooo grateful for moments like these when they come along 🙂 

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  • Donna says:

    I find Instagram difficult. My day-to-day life, to put it bluntly, is incredibly dull. My feed would literally be the same things every day because that’s the reality of my life. I see the four walls of my own house and my mum’s and that’s about it. And to share that would, admittedly, be incredibly boring and nothing special to look at. Most of the time I only share something when I step out of that normal routine and do something that’s “worthy” of sharing.

    I do feel some guilt etc over that. As it’s essentially cherry picking the best bits. It’s not showing the reality of life with chronic illness. However, I think because my aim is recovery I want to put the glimmers of hope in the spotlight.

    I hope in future it will be something I can look back on and see the little changes and forward progress that can be difficult to see as I live through it. In the meantime, it serves as a reminder that I can get through the tough times. When I am struggling, it gives me something positive to focus on.

    I appreciate that this is pretty selfish and doesn’t show the reality of life with chronic illness. However, a coping strategy I use is to not focus on the negative and I have done a lot of work to change my mindset and how I view my life. So I guess my Instagram is also a reflection of that.

    I’ve toyed with the idea of being more open but, despite being a blogger, I’m a pretty private person. And for now I choose to keep it that way.

    • Emma says:

      Hi Donna,

      Thanks so much for taking the time to reply. I totally understand you finding Instagram difficult. I have two accounts (one for the blog and one personal) and my personal one often has long periods of time where I don’t post anything, or its a little pic of my nephews lovely face or a pretty flower…during these times it’s when (like you) I’m in the four walls of my home really suffering. The last thing I want to do is post stuff, especially a photo of my bed or the curtains!!

      I know what you mean about the guilt about only posting the best bits, but then I think its human. We all do it don’t we. Whether we are living with an illness or not!

      And I don’t think you are selfish at all….you said you are selfish. Goodness, totally not. You are living with something so bloody tough to live with, and coping the best way you know how, as all of us are.

      Sending you lots of love,

      Emma x

  • Teresa Hobbs says:

    Great post! I understand that dilemma. I typically swing away from Instagram for that very reason because it’s more about “showing” parts of your life. FB, while very busy/noisy is more about “telling” and I get a better sense of being able to consistently talk about where I am. It’s the platform that better accommodates how I want to express my journey.

    It is very easy though to feel like you can judge a person’s life by their highlights reel. It’s just not simply possible no matter what level of health they are enjoying. Though for me, I tend to read FB and IG posts between the lines. I look at rhythms and fluctuations in how people post to gage how they might be doing. Like if they don’t post for a while, sometimes that can indicate that they are struggling or just having so much fun that they didn’t think to post. Everyone is a bit different.

    Anyway, for me, I choose to focus on things that keep me motivated and those things also tell a story about who I am. And it’s a lot of fun when I can SHOW a moment or two of one of my wins. I know I root for you when I see one of yours. 🙂

    • Emma says:

      Hi Teresa 🙂

      Isn’t it funny how we all have such different perceptions of the various social media platforms? I found it really interesting reading your feelings around Facebook vs Instagram just then. I actually find Instagram really lovely generally, especially when it comes to the page I run for the blog. I often write a caption beneath each photo I post, some quite in depth and reflective, and somehow it feels less exposing than Facebook? However, my personal Instagram account is a different story and the one that triggered this entire blog post!

      I vary in how much I want to share from week to week, all depends how I am feeling and how my health is actually. But I think whats important for all of us is to trust our gut and use social media in a way that feels healthy and balanced and right for us as individuals.

      Totally get what you are saying about reading between the lines on posts too….very much agree with you Teresa. I guess our close friends/those who truly care (and matter!) will do that. Its a very good point.

      I had a period of time earlier this year where I was having the worst time emotionally and physically and didn’t post anything for quite a while (on this blog included) I guess that silence speaks volumes doesn’t it.

      Thank you as always for your lovely comment, I hope you are doing okay and I’m sending you a massive hug across the ocean!

      Emma x

  • Nicola Brewster says:

    Hey babe,

    Such a complex question, but also only as complex as we make it in our minds. What motivates us to share or conceal? Other people’s opinions? How much do we care about other’s perceptions of our lives? Are we bringing comfort or jealousy? Are we seeking attention or to entertain and amuse?

    As a bit of a Facebook over-sharer my knee-jerk answer would be ‘its easy, post what you want when you want’ (as long as it isn’t illegal or grossly offensive). There are no social media police. As a mother I share to unite and celebrate motherhood and children in both the challenges and triumphs. I also like to share things that make me laugh and may bring some light relief to other’s. Sometimes I think I may have shared too much, and I usually have, but so what.

    Most of those that follow this blog will be limited physically in some way by an illness, don’t let the world of social media limit you too. Share what you want ; ) xx

    • Emma says:

      Hi Nik

      Lovely to see you here and read your reply. Really interesting hearing your view actually, you speak a lot of sense (always have!)

      You are right, it’s only as complex as we make it in our minds. Most of the time, I just let go and think ‘people can think what they want’, but id be lying if I said I am NEVER concerned what people might think. Its just not true, and I think that is the case for the majority of people isn’t it. Part of being human really.

      Your approach to social media always inspires me actually, you genuinely speak your truth, always have, and that something I love about you.

      And the last sentence you said? Ive never thought of that before, and I bet that comment will actually resonate with lots of the readers of this blog….its true….we have enough limitations placed upon us as it is, why add more to that pile!

      Love you bestie.

      Em xxx

  • Katie Angelique says:

    It’s such a difficult area to call….we are just normal people, who want to do normal stuff like post on FB! Ideally, we should be able to put whatever we want on & people mind their own business, shouldn’t we? It is easier said than done, but I do feel when someone has CFS people think it opens the door to say whatever they like. I guess it depends on if you are at a point in recovery where you are resilient enough to not be upset by the potential comments. I don’t use FB yet as I’m not strong enough to hack it & my extended family aren’t supportive, but I am improving as hiding away for me reaffirms to myself I have something to be ashamed of. I am sooo happy you enjoyed your concert!! Who do you like best? I have always been a Mark fan ☺ x

    • Emma says:

      Hi Katie!

      I totally agree with (and resonate with) what you are saying. When I was at my worse in 2010 – 2011 I remember my brother actually taking me off Facebook! Mainly because for me at that time it highlighted the disconnection I felt from everyone and their lives, and the outside world that I couldn’t be a part of. I think you have to be at a certain point, or like you say, have a certain amount of resilience to cope with Facebook don’t you?

      I’m so sorry to hear that your extended family aren’t supportive Katie. I hope those close to you are more so? It is so important that we do all we can to protect ourselves and surround ourselves with people who DO understand isn’t it.

      I’m lucky in that those around me are supportive, so no one has really said any nasty comments as such, but at the same time, I still think there are a lot of people in my life who don’t fully understand how much this illness affects my life.

      As for Take That, I currently like Howard the best. Oh my goodness he was so lovely Katie!! And at the start of the show he appeared on a little platform in the crowd right in front of me!!!! When I was a teenager Mark was my fave tho. hehe.

      Lots of love to you and thanks for taking the time to comment. Really appreciate you being here xxx

  • Katie Angelique says:

    Aww thanks for your reply (and lovely notification!). We all appreciate you doing this blog too it helps us so much xx That is so relevant to me now (your posts always seem to come at right time!) as I am in my 30’s too and since started to dip my toe into the world, have had to face everyone else’s marriage & children etc. I mentioned to my friend & she said it is important to remember those things aren’t ‘better’ , just different. It helped me. I am lucky yes in that my immediate family are more than amazing so makes up for it! But I do feel CFS friends are really important too because they ground you in how well you are doing for a shared situation, not comparing to others who are fully well. Hope that makes sense. Anyway Take That omg that must have been so exciting & funny Howard on the platform hehehe! Cute men definitely should be mentioned in this blog for their role in healing hehe. I went to see The Script 2 years ago & was far from stage but then Danny entered from the side door next to me eek he he!! Take care Emma

    • Emma says:

      Katie!!! I’m sure we are living parallel lives! I also went to see The Script two years ago. Weren’t they absolutely amazing? I’m hoping they will tour again soon, new album is on the horizon isn’t it. Yay! And Howard on the Platform…I know!! So funny, I was screaming and so ridiculously excited, I felt like a teenager!

      On a serious note, I am also in a very similar position to you regarding the marriage and kids thing. It’s tough isn’t it? The illness situation really does put things on hold for us and its so difficult to navigate through, especially when we are gradually getting further into our 30’s and theres that background sense of our clock ticking. When we are surrounded by it too (friends etc having babies and weddings and all sorts) it really does evoke such mixed emotions.

      You have inspired me to write a blog post on all of this. I have been wondering whether to or not for some time,but hesitated because it feels so personal, but I have a sense many people will relate.

      Sending loads of love your way Katie,

      Emma xx

  • Katie Angelique says:

    Teehee imagine! Although we look almost opposite in appearance (me being unfortunately pale and dark haired!) so we shouldn’t be too scared we got separated at birth lol ☺ A fellow script fan yay! Yeahhh it was sooo good wasn’t it! Yay I didn’t know they were making a new album! Excited.
    I’m sorry you are feeling that way too…. You are right it is tough and it is also tougher by it almost being a taboo. Like you couldn’t say on someone’s birthday ‘I wish it was my birthday’ lol! Although at least then you know u would eventually get one I also feel a bit embarrassed to admit it too, especially to friends who don’t understand CFS as much as I’d like. I probably have too much pride and always pretend I’m fine and am not bothered about that stuff anyway. So your post will be so cool, as long as bit doesn’t upset u to write. Take care hope u are enjoying the sun xx

  • Fergus Elley says:

    Hi Emma, I have had this CFS ilness from the age of 16 after an extremely severe case of glandular fever. I wasn’t diagnosed till I was 30 and had become a large animal Veterinarian. My body gave up after a couple of years and I should have listened to it as we can damage our brains coping systems and neural pathways perhaps permanently through ignoring the warning signs for years…..

    My take on social media is if I was in your shoes Emma is that from what I have read of your journey that maybe u will never shake your illness and maybe u will regret not putting it out there ‘regardless’ in any of the forums on the vast internet public domain whether u r sick one day or well i.e. don’t worry about how u look or feel is my advice, let the world see u in all your seasons as that is the ‘hard and cold face of CFS’. The world deserves to know, maybe I will start doing it myself more on youtube etc.

    I hesitate to write this and saw this via following your blog almost a month ago….. Sometimes the best decision is the ‘one that scares us the most’, that rocks our pride but if it can help fellow CFS sufferers and the ‘public image’ of CFS then should it really matter!!? I think it is also a stand of ‘defiance’ when we don’t worry about how yucky we might look in our minds that day and is very good for our self image when we do that as it increases self esteem and acceptance!! Fergie, nz.

    • Emma says:

      Hi Fergus,

      So sorry it’s taken a little while to respond to your message. I only just noticed it was here! I need to sort out the tech side a bit and the alerts – also for you guys too in terms of when you get a response to your replies!

      Thank you so much for taking the time to respond to this post. We have similarities in our cases in that I also had severe glandular fever aged 16 which seemed to trigger off this whole ME/CFS situation. It seems quite a common thing doesn’t it? A lot of people i speak to fell sick around age 16 after a bad case of glandular fever.

      Anyway….thank you so much for sharing your views and advice on the social media thing, especially with regards to my own situation. It’s sometimes so challenging to share the ‘bad days’, more so than the positive stuff. But one of my core values is authenticity, so I really am working on sharing things, exactly as they are. The light and the dark. Embracing both sides, as uncomfortable as that may sometimes feel!

      When we have CFS/ME or any similar chronic illness, the ups and downs can be more dramatic and more frequent than the average healthy persons ups and downs in life, which I find sometimes makes sharing all of this even harder! I can be up and about, feeling smiley and happy one day, then bedridden and feeling absolutely dreadful (and fed up!) the next. I know its the same for so many of us with this condition. But…. I guess this alone, is why sharing the reality is even more important isn’t it. In terms of raising awareness anyway.

      I often also find, when I share the ‘tougher’ times, is when so many people reach out and say ‘i feel that too!!’

      Thanks again for your reply Fergus and for being here! I wish you all the best as you continue to find your way towards healing in your own recovery path too.


  • Fergus Elley says:

    Nice reply comment, cheers, fergie.

  • M.Eme says:

    This is a difficult thing. I also fluctuate massively. I will cut a long story short but I was called for an interview with the DWP where I was reported as going on holiday, having a full and active life, being able to walk without aids, to bend and stretch and OMG being able to go to the countryside to take photos. One of the most healing things for us, is to get out the house and sit in nature.
    This obviously came from facebook and if people only knew what life was REALLY like, that these are the highlights! I mean I hardly have a full active life, it’s madness.
    It has left me socially isolated as I now do not dare share stuff. I also do not know who did this, so the knock on effect is massive. The stress caused a relapse and I am now anxious and paranoid over which ‘friend’ did this. I have had loss, grief and all are hard to deal with but being reported for even having the tiniest bits of life, when I can, has deeply affected me, in a way I can’t rationalize.

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