Content warning: Death, dying, and physical illness.
You have a rare or chronic illness and you struggle with feelings of being alone and people not understanding. So you go onto Facebook, or another forum, and find a private group of people with the same issues as you. Amazing, you’re no longer alone!
This becomes your safe place to ask questions, to share information, to vent, to laugh with people who understand you. They also ask questions and you share your experiences, they vent and you validate them, they make jokes and you all laugh.
They’re from other countries or cities so you might never meet in person. But this safe space really becomes a place full of people you really connect with in a way that you can’t with even your best friends. They’ve experienced the very things that make you feel horrible and alone.
I’ve formed lots of lovely online friendships/connections.
Facebook is full of closed support groups. But it’s not always through a group either – there are lots of ways sick people can connect online and in the age of social media.
There is a bit of an Instagram community of chronically ill people. I’ve had people find me through hashtags or my blog. They might message me, then we add each other as friends and like each other’s posts. Respond to each other’s Instagram stories about medication or treatment. Celebrate or sigh together and swap tips and stories.
The connection can be very easy as you’re meeting someone who just *gets* a big part of your life that others just don’t.
But there is a problem… you’re connecting with chronically ill people of varying levels of seriousness. There could be people with serious issues, multiple issues or deteriorating problems. They could be older, or younger, or not get the help they need in their country or with their finances. They could be very ill, or something serious could suddenly befall them.
My online friends are regularly sharing their hospitalisations, new diagnoses and sudden serious illnesses.
But there’s the ultimate fear… what happens if one of your online friends dies?
I mean, everyone dies one day. Healthy people could get hit by a bus. But, depending on the illness and/or severity, the chances of it happening for a chronically ill person is unfortunately higher. On average.
So there is a chance that something could happen to someone you’ve connected with online and they could, very unfortunately, pass away too soon.
When your online sick friend dies, there are some really specific things you might go through.
- You might have the same condition as them – this can make you fear for yourself and your morbidity. Which can, in turn, make you feel selfish for thinking about yourself
- You’ve lost a support person as well as a friend – your situation is not straightforward, they could be helping you feel less alone. What do you do now?
- You might not have met in person – you might feel confused about the “validity” of your friendship
- There might be a group of you mourning this person, but you’re probably not together as they’re also online friends – how do you do this alone? Supported, but alone
- You might be in a different country or not have met their offline friends or family – are you allowed to message their family and send your condolences? Can you go to the funeral?
- It might feel hard to explain why you’re upset or distracted at home/work and you might feel uncomfortable talking to people about it
While I’m not the best person to answer the questions raised, the main reason I’m putting it down is to remind you that if you have these feelings, you’re not the only one. Looking up “cyber grief” is very helpful.
It does feel like a relatively new concept. The idea of mourning the death of a friend you never met. I can’t imagine it could happen as easily 50 years ago as it can now in the age of social media, blogging and online support websites.
But with the shrinking of the world with how connected we are, it can and does happen. You might have to deal with this unique type of pain.
Just because it’s not often talked about, doesn’t mean it’s not 100% valid.
You have every right to feel as sad as you feel. To feel as scared as you might feel. And to feel as alone as you might feel.
You are allowed to mourn the loss of your online friends and you shouldn’t feel silly about it.
These sort of things affect us very much and I’m not very good at expressing this type of stuff… But it’s really about losing what that person brought to the world and to you. Their spark, their shine, their kindness, their humour, maybe their darkness or their dryness, their seriousness or their energy. Whatever it is in them that makes them stand out to you.
And if they have the same condition as you, even if they were worse off or had other issues too, it’s very easy to identify closely with them and feel the loss very personally.
Finding out that this has happened can be very shocking and it’s very important for us to look after ourselves in these times.
It’s important to allow the grief and the feelings. It’s also important to also remember that in the support group, there might be a lot of scared people and you’re not alone. To remind ourselves that this person probably wouldn’t want everyone to panic.
That it’s important to remember all of the nice conversations that they had with you and others and remember the person properly.
In the time I’ve been on Facebook support groups for my primary immune deficiency, I’ve seen a few people pass away and it’s always a huge shock and very sad and upsetting.
More recently we had the passing of a woman who really touched a lot of lives with her kind words, beautiful personality, and incredible strength an empathy that I feel like I’ll never see in another person again.
This is what has sparked this blog post. She always commented on my blog posts and I sometimes wrote things with her in mind, knowing she’d relate to it. But this time I’m writing this everyone else and thinking of her.
It’s a really hard time, and I just want to remind everyone dealing with anything like this that your grief is real, you’re allowed to be upset, and there should be no shame or hiding your pain if you feel like it’s less valid.
The reality of these online support groups is two-fold, the reward is incredible in a world where you feel so alone, but the risk is high too when it comes to loss.
But I think it’s worth it to have met any of the incredible souls who have supported me through things no one in my physical life could understand.
And for those who have left us and whose pain has ended, you’ll be in our hearts forever, physically, not just online.
If this post brought up difficult feelings for you, below are some grief support services in New Zealand
Emergency In NZ, ring 111 for emergencies.
Google “grief support” in your country or area, or in an emergency, call your local emergency number.