Social media. Instagram. Where to start?! It can be such a positive, helpful, caring space. But it can also be such an overwhelming place of comparison and triggers. So how do you navigate your way through it all, especially if you're also navigating your way through a difficult NICU journey?
When I was in NICU I connected with a couple of other NICU mums on Instagram. I found their reassurance, and even just their presence invaluable. Knowing that someone else had been through the same, felt some of the same emotions as me, and survived, really helped me. Knowing someone else could relate to my feelings made me feel a little less alone, and a little less scared about what was happening.
After discharge, I felt increasingly isolated in motherhood. My experience wasn't anything like my previous experiences, and I struggled to relate to other mums. Other people just didn't "get it" and I found that hard. I increasingly longed to connect with other preemie and NICU mums and dads. I wanted to know that I wasn't alone in my feelings.
It was hard to find those people, and that reassurance, in real life (and is increasingly so at the moment in the midst of a pandemic), but I discovered
a lovely, supportive community on Instagram. I found other parents who "got it" and that made such a different to my experience as a preemie mum.
But whilst the sense of community on Instagram is wonderful, it doesn't come without it's difficulties. We all deal with our experience in NICU differently. We are all different, and we all have different back-stories. Our trauma is different, although many of our responses are shared. What triggers one person may not trigger another. We all process our trauma and emotions in different ways. At different times on our journey.
I'll be honest, there are times when I've found Instagram a tricky place to be. I find myself triggered or I find myself comparing myself and my baby to others. So I've put together a list of a few things that may help you navigate your way through social media if you, like me, find it a difficult place to be sometimes.
Find your Tribe
Connect with the people that you relate to. Surround yourself with the people that support and lift you up. There are many NICU communities out there offering support and encouragement. Have a look and find accounts which inspire and help. Make sure you fill your feed with positivity and the kind of discussions you want to read and be a part of.
Be Selective
Don't be afraid to be selective. Only follow the accounts that you find helpful or supportive. If this changes, don't be afraid to unfollow. Or simply mute. Similarly, if you feel triggered by content at a particular time, mute accounts you find triggering for a while. No-one knows if you mute and, even if they did, it doesn't matter - your mental health is paramount. If you're feeling triggered, or don't want to see difficult content, make sure you take it out of your space - even if it's just for a while.
Your Account
There's no right or wrong here. Everyone wants different things from Instagram, and will use it differently, but it's worth having a think about how you want to use it. In particular, who you follow and how you respond to NICU content.
Would it help you to set up a NICU focused account? You might want to keep a separate non-NICU one that follows everything else. This allows you to switch off completely from NICU content when you want/need to.
Or do you just want everything together in one place? In which case, maybe think about making sure you diversify your account. Follow a couple of other interesting accounts, perhaps in a completely new sphere. Keep it fresh, and interesting. It'll remind you that you exist beyond your NICU experience
Remember that the Instagram algorithm is a peculiar thing. It almost creates an echo-chamber for you, feeding you more of same content you frequently engage with. It's just worth being aware that to diversify your account and hear other views, you may need to actively look beyond your feed.
Prioritise Yourself
Be selfless. Yes, you'll find yourself as part of a community and you may find yourself reaching out and helping. Our community relies on people feeling able and wanting to share their experiences. But, it's so important that you look after yourself first. Ultimately you need to protect your mental health and sometimes that might involve taking a step back.
Awareness weeks and months can often be a culprit here. We all want to share and raise awareness, to help others in a similar position. And that's so, so important. But these events can feel overwhelming. Constant chat and so many images. Sometimes you need to step away and have a break. And if you feel like that, then please do. Raising awareness is important but your mental health is more important. Prioritise yourself.
Don't Compare
Just because you're within a supportive community doesn't mean the urge to compare goes away! I'm now pretty good at not comparing my baby's milestones to term babies of the same actual age. But I do, from time-to-time find myself looking at other preemies of a similar age and panicking that my baby isn't doing as much as they are. I know it's easy for me to say just don't do it, but "comparison really is the thief of joy."
Similarly, don't compare your journey to that of others. Sharing experiences and relating with others is great. Comparing your journey isn't. I've had messages saying that they were "only in NICU for a few days" so don't feel that their thoughts and feelings matter. They absolutely do. Everyone's stay is different, but each and every NICU journey - and the feelings that accompany it, are valid.
And one final thing on comparison. Don't forget that accounts can often be a highlight reel of someone's life. So whilst a grid may only show smiles, there's usually a whole load of real-life going on behind the scenes.
Everyone is an Expert
Everyone is an expert on their own life, their own feelings, their own journey. But no-one is an expert on yours. So please don't feel that you should be responding or behaving in a certain way. Do you, and do it your way. This applies to your baby too. You know your baby better than anyone. It's great to chat about development, get tips and seek reassurance, but please remember that if you have any real concerns about health or development to contact a professional.
There are many great professional accounts on Instagram. Psychotherapists, occupational therapists, paediatricians, and many others. So many of them provide excellent general advice. But it is just that - general advice. It may sound obvious but if you have concerns or queries about you or your baby's health, please seek specific professional advice. I think this is especially relevant in the pandemic as people seek out reassurance, keen not to attend surgeries or clinics. But please don't rely on anecdotal or general advice. And also remember, anyone can hold themselves out as an expert online - please check credentials before taking into account what they say.
Be Kind to Yourself
And finally, my kids will tell you that one of my only rules (other than picking up wet towels from the bathroom floor!) is "Be Kind". To one another. To yourself. And it applies here. If you need a moment away from social media, then make sure you take that step away. For as long as you need. If you feel you're benefiting lots from a community but not sharing and giving as much as you wanted to, then don't beat yourself up about it. That's what we're here for. Sometimes you need more support than other times. If you're in that place, take all the support you need. Don't worry about responding to messages or posting updates. Give yourself permission to take what you need and only share what you want to.
I hope that helps. Instagram is a wonderful place. A place of shared stories, community, support and guidance. I set up @nicu_ology to create a safe space where people could enjoy just that. A kind, community space for NICU parents, wherever they are on their journey. But having done so, I think it's also only responsible to reassure you that sometimes you may need to step away or to put boundaries around your use of social media. Ultimately we're here to support you, so please be kind to yourself and take what you need from this space in a way that suits you.
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