The Social Media Cancer Community – A Comfort or a Curse?

So, you’ve been diagnosed with cancer and you’ve updated your status on your social media platforms – whether Instagram, Twitter or Facebook.

But before you get immersed in the social media cancer world, have a read of this…

The social media cancer community is a place for anyone who’s going through the different stages of different treatments for different cancers, all of whom are looking for support, advice and encouragement.

The community isn’t merely made up of cancer patients and people who’ve had cancer, it’s also populated by cancer charities, organisations, health and wellness bloggers, businesses, patient advocates, medics, nurses, cancer specialists, medical facilities, support groups and carers – all of whom are trying to help those going through cancer.

Support is on tap.

You can post a question or comment at any time of day or night and you can guarantee that someone, somewhere in the world will reply with comforting words of advice and encouragement.

Being part of the cancer community is often referred to as being part of an unenviable club.

And the social media cancer community really is a club. You’re sitting alongside plenty of other people who are going through similar things to you: similar physical, emotional and cognitive struggles.

Members of this ‘club’ know how it feels to be diagnosed with cancer, the fear associated with waiting for scan results, the fatigue, the feeling when friends disappear in real life, the guilt of being a parent/spouse with cancer and a whole host of other common feelings.

And because of this commonality, you can openly express your fears, worries and anxieties in the knowledge that you will receive support and encouragement in return without judgment.

You can talk to your fellow club members about things that you cannot discuss with friends and family who haven’t been there.

And you can receive words of comfort from people with experience – not something that many friends and family members are able to do.

This club can easily become a lifeline and you will most likely make some great friends – some of whom you may even meet up with and become real-life friends.

But with all its positives, there are some aspects of the social media cancer community that you should be wary about…

1. With the positive, comes the negative.

Remember the advice we give our kids to not compare themselves to what they see online? Well, the same goes for cancer patients.

Going through cancer is rough. There’s no doubt about it.

Most people find themselves at an all-time low at some point during the treatment process.

Not only do you feel physically awful for much of the time, but you can also look fairly rough at times – bald, no eyelashes, no eyebrows, skin rashes, overweight, underweight and often just like a rabbit caught in the headlights.

And then you look on Instagram and you see pictures of people going through exactly the same thing as you, but looking amazing – full makeup, gorgeous clothes (when you can only manage pulling on some old tracksuit bottoms and sweatshirt), tattooed eyebrows and a beautiful scarf tied perfectly.

They might be off to hospital for their chemo, or out for a mid chemo-cycle meal or just making themselves feel better by getting all dressed up.

Don’t get me wrong, all of this is absolutely great for them – it’s genuinely wonderful to see that they are able to do something to defy cancer and prove to themselves (and to the world) that cancer is not going to get the better of them.

But beware. If you’re feeling at your lowest point both physically and mentally, looking at these pictures and accompanying messages won’t inspire you, they’ll more likely just make you feel worse.

2. Running around.

And the same thing goes for exercising. Everyone knows that exercise is important during cancer treatment. But seriously, sometimes it’s just impossible.

When you’re lying on a sofa in a darkened room feeling nauseous and unable to move for fear of vomiting (for the fifth consecutive day) and you’re looking for support online, you may well come across photos and posts about people running 5k and 10k races, cycling, doing triathlons, swimming, going to the gym and playing sports during their cancer treatment.

This can push you further into a slump rather than pull you out of it.

Again, this is genuinely brilliant for those who are able to achieve these sporting accolades during their treatment and good for them telling the world that they will not let cancer get them down – but for those who aren’t able to do reach those sporting milestones, just beware that you’ll come across this type of thing and it might make you feel worse about what you can’t do.

3. What did you say?

You must always remember that anyone going through cancer will be going through all sorts of emotions and feelings including stress, anger, resentment and frustration.

With their emotions running high, people can sometimes say things that may be upsetting.

It might not be aimed at you directly, but in your sensitive cancer-patient state you’re very likely to take it personally.

Don’t.

It’s not about you.

Don’t get drawn into a discussion, come out of social media, have a cup of tea and forget about it.

4. It’s not personal.

With social media platforms not being set up for lengthy wordy posts, things can sometimes be misconstrued.

And yes, this happens on social media all the time.

But you might be feeling overwhelmed and fragile which means you’re likely to get upset by some of the things people say.

Again, remember that this isn’t personal.

Switch off your phone, talk to someone in real-life, watch some telly and forget about it.

5. And then there is the cancer-competition.

Everyone has a different cancer situation. Some cancers are incurable and some cancers can be removed.

Some treatments have harsher side effects than others.

Everyone has a different treatment regime and everyone is affected differently by the treatment.

But no matter what your cancer story is – it is terrifying to be diagnosed with cancer and then live under the cloud of fear that the cancer will come back or spread.

And these fears are valid regardless of your grade, stage or type of cancer.

If you feel at any time that some of the people you are interacting with on social media are making you feel otherwise, it’s time to block/unfollow them and move on.

6. People die of cancer.

There, I’ve said it. It’s horrible but it happens and it’s likely that some of the people that you ‘meet’ on social media will die from cancer.

And that is emotionally tough.

You feel a whole raft of emotions from sadness to guilt that you’re still here and helplessness that you can’t do anything to help them.

It also reminds you of your own fragile mortality.

On balance, social media can most definitely provide more support than discouragement, but for anyone dipping their toe (or whole body) into the social media cancer community it is worth remembering:

1. Use it carefully.
2. Don’t get too invested – dip in and out.
3. Be kind and understanding of others.
4. Don’t take anything too personally.
5. Don’t compare yourself to others.

And if you do all of this, you will hopefully benefit from what is, on the whole, an incredibly warm and supportive place to visit.

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About the author

Sara Liyanage, is author of  Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. This book follows the physical and emotional impact of breast cancer on Sara’s life, and provides practical help by way of checklists at the end of each chapter.

Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help.

The website provides practical advice for each step of the way, together with many signposts to other online resources and lots of personal stories.

Follow Sara on FaceBook, Twitter and Instagram  for fresh updates.