Social Media is a Carefully Constructed Facade

Yesterday, I met up with a friend. After a couple of hours of window shopping (and a little too much actual shopping – sorry bank balance!), we sat down for a drink and the kind of chat I wish were more common: a proper conversation. None of this ‘how are you, I’m fine thanks, how are you’ crap which most of us seem to spend the majority of our time reeling off because that’s what we’re expected to do.

We spoke a lot about all that’s going on in our lives. Both of us have great stuff going on at the moment, but naturally we’re also both dealing with things which aren’t exactly ideal, and we’re managing them alongside jobs, university, and some sort of vague attempt at a social life.

I spoke a lot about Mum; how she is, how the rest of my family are, how our house is, basically lots of cancer related stuff. My friend responded with words I’ve heard so many times in recent weeks: ‘I’d never have known’.

From so many people, for so many reasons, I seem to be hearing this a lot more than normal lately. ‘I’d never have known your mum dying affects how well you’re sleeping’. ‘I’d never have known it affects your studies’. ‘I’d never have guessed that ‘x’ was going on’. Usually accompanied with ‘you’re coping so well with this, I don’t know how you do it’.

If you look at my Twitter and Facebook, they paint a fantastic picture. I look after two lovely boys for four days each week, and you’ll see pictures of their various baking endeavours, their glittery creations and their muddy wellies, usually accompanied with something amusing that one of them came out with. You’ll see photos of volunteering things I’m doing: whether it be a selfie on a train to London, a photo of somewhere pretty I’m sitting, or something else, you can be sure it’ll be as photogenic as I could make it in the moment. And that’s before we get to the various updates about the revision I’ve been tackling, culminating with a photo of all my notes last week before my exam. There will be some jokes on my immediate family’s Facebook walls, conversations with other family on Twitter and every now and then a link to a news article I found thought-provoking.

But the stuff I don’t post on social media are the things that keep me up at night. The discussions I’ve had with Dad about Mum’s health. Worries about whether Mum will make it up the stairs tonight. How exasperated I feel that my family seem to have stopped leaving the house. The crying that comes when it hits me that Mum really is dying. The questions I mull over each day: ‘what will it be like when…’, ‘what about if…’, ‘how do I cope with…’. I certainly never post my fears about whether I’m coping well, if I’m making the right decisions, and what’s going to happen in the future.

The thing is, I’m not the only one. If I did start posting all of that stuff, kinder people would think it was quite odd, and less kind people would probably react with hostility – how would you react if this popped up on your feed: “crying because I just walked past people graduating and Mum probably won’t be around when/if I graduate”?

I have a number of friends going through a lot of tough situations at the moment. Physical health problems, mental health problems, family issues, you name it. I have friends in hospital, friends who’ve recently received difficult test results from their GP, and friends going through family break ups. If you looked at these people’s social media profiles and then they told you about these issues, you’d probably say ‘I’d never have guessed’.

More than any other area of our lives, social media lets us choose exactly how much or how little we say to the wider world about our lives. No-ones social media profile can fully represent that person – after all, how do you capture a human personality in 140 characters, or a well-filtered selfie? And that’s before you get to the unwritten social rules on what you can and can’t post – don’t cry for attention, don’t post anything that could upset or offend anyone, do your best to be funny – that actually restrict the freedoms we’d so dearly to love to have, and make the whole social media thing so much more difficult.

Assuming a friend is fine because they posted a happy Facebook status is like seeing someone wearing makeup and assuming they look the same without it. Facebook and Twitter and Instagram can so easily turn into makeup for your whole life: social mascara, if you like, personal concealer, maybe societal hair straightening. Please don’t ignore hints that they might not be so okay right now, if there are any. Reach out to your friends, drop them the occasional text, start some real conversations. Summer can be an incredibly lonely time, seeming to stretch on forever if things are difficult. Take out your makeup wipes, and find out if your friends really are as ‘okay’ as their internet presence suggests.

Featured: http://www.huffingtonpost.co.uk/naomibarrow/social-media-is-a-carefully-constructed-facade_b_8000484.html

Dear Humans of Facebook

Dear Humans of Facebook.

Tonight, I noticed that my blog from last week had spiked in Facebook likes. I decided to try and find out why, so I could thank whoever had shared it.

I found the post on a Facebook page with almost 300k likes. It’s an American page and is not a charity or organisation I’ve come across before other than briefly on Twitter, but they clearly do some great work.

They’d posted it as a recommended read, and initially when I saw it, I was delighted! There are over 1200 likes and over 250 shares. I then began to read the comments, of which there were about 40. There are some people who were clearly hurt by my blog, or by life, who were angry with me, or cancer, or life (or all three) and they responded by writing their feelings (which they’re completely entitled to do) on this post.

I’m going to be honest, some of those comments really hurt me. They made me cry. They made me question myself and my writing.

Since then, I’ve had a wonderful army of friends and family message me. Some of them have responded to some of these comments, most of them have just made me laugh and cheered me up. I’ve also reasoned with the ratio of negative to positive responses. I’m fine now and I guess whenever you post things on the internet, you open yourself to criticism, but I’d like to take the time to respond to some of the sentiments expressed, because I will feel more at peace with myself once I’ve done that.

To the people telling me I’m selfish

I can totally see where you’re coming from and this is something I worry about every day. Am I being selfish? Should I give up everything I’m doing and go to stay with Mum? Should I leave uni, quit my jobs and just go home?

That was my first instinct, yes, but I’ve spoken about it with my family and we don’t believe it’s the right thing to do. We need normality. We don’t know how long Mum has left and when she was first re-diagnosed it could well have been years. I can’t spend years by her side – firstly, we’d kill each other, secondly, what good would that possibly do?! Mum is completely on board with this, one of the first things she said upon waking from the coma she was in was to tell my brother and I to go back to uni. Heck, she carried on working herself until she was in a coma. Furthermore, how are we supposed to afford to live without working? I think we’d struggle.

With regards to my writing about how I can’t plan or I can’t do certain things I might want to do, I’m not writing this to complain. I don’t feel a sense of injustice about it at all and I’m in no way angry or resentful of my Mum for being the reason I can’t do these things, I’m simply trying to explain to those who’ve not been in this situation how it impacts each area of my life.

To the people telling me I’m whining

You will find I don’t do whining. I do getting on with life. Some people actively try and get me to talk about things related to Mum and I actively don’t, unless it involves sorting something out or trying to understand something, because I’m a very solution-focused person and I don’t see the point in whinging or whining. I blog because it’s a lonely situation to be in and others are in that lonely situation to, and I have had messages from people thanking me for helping them feel less alone. I blog because there is so little out there for young adults who have parents with a terminal diagnosis, and I want to use my voice to change that. I blog because I find it cathartic.

To the person who told me I can’t spell

I’m English. We use ‘s’ rather than ‘z’ when writing the word organise. I’m sorry if that offends you too much to read my blog.

To everyone who referred to me as a caregiver

Yes, I am classed as a ‘Young Adult Carer’ according to the local carers charity, something which I’m still coming to terms with. But please remember that first and foremost, I am a daughter of an amazing woman who is dying in front of my eyes due to a really crappy disease. I am hurting, I am coping, I am trying to come to terms with things.

To everyone who told me I’m not dying

Firstly, you know nothing about my life so you don’t actually know that. That aside, I’m not dying, but my Mum is. Someone who I’ve known all my life. I’d argue that a part of me is dying because she’s been such a huge influence on me and yes, some of her will live on through me, but equally some of me will almost go with her.

To the people who told me to ‘get my priorities straight’

Mum is my #1 priority. Everything in my life is organised around that. Next week I’m working on a residential – but the staff are aware of my situation and there is a backup staff member in case I have to go home. My supervisor at uni is aware of my situation and when necessary I go home rather than staying at uni. I have missed lectures and I have had to use mitigating circumstances. I’ve had to move an exam to summer, and therefore revise all summer, because I missed some of uni to stay with Mum. I have lost touch with friends because I’ve been home rather than going out and socialising on weekends. I’ve missed their birthdays, their concerts, their celebrations and it’s amazing any of them have stuck by me to be honest! My Mum is my priority but I also have a life to live.

To the person who said they hope my Mum uses her strength to smother me while I sleep

Did you actually read what you wrote? (Also I sleep upstairs when at home and Mum can’t currently use the stairs so hopefully I’m safe for now!)

To the people who said I see my Mum’s illness as a nuisance

Yup, that’s cancer for you! It is a damn inconvenience and a pain the backside for all involved.

To the people who said I need a reality check

Every single time I see my Mum disappearing into her armchair, every time I see her knitting baby cardigans for the grandchildren she’ll never meet, every time I see the ice cream tub of medication in the bathroom, the hospital bed in the lounge, the ‘get well soon’ cards all around the house… I get a reality check. I have seen my Mum almost die and come back to life. I have fed her when she couldn’t move her arms, wiped her face when she could hardly speak, talked with her when she was seeing a dinosaur on the wall. I’ve had a lot of reality.

To the people who said ‘I’m making it all about me’

I’m writing from my point of view. I can’t write from my Mum’s point for view (or my Dad’s or my brothers). I write personally from the heart about how I’m experiencing the ups and downs of this situation. Please refer to the response about whining for why I write this blog.

To those who say they hope Mum never reads my blog

She reads whatever I post. We chat about it, we chat about a lot of things as a family. When I’m unsure about something I ask her before posting it, and I asked her before starting this blog.

To those who ask me to think how my Mum is feeling…

…having brought me up for years

My Mum is proud of me. My Mum is incredible and I hope that some of that is reflected within myself. My Mum loves spending time with me and I love spending time with her. I help around the house as much as a possibly can when I’m home (and frequently do things when I’m not, whether it be supporting other members of my family or buying suncream).

…when she doesn’t have long left

My Mum has a strong Christian faith and is incredibly peaceful. I admire her faith and her strength so much, I think it’s amazing.

Finally, to everyone who asked what it’s like being me (normally in a slightly less polite way!)

It’s damn hard a lot of the time, but also wonderfully brilliant at times because I have a loving, caring, family and some wonderful friends. I am so grateful to have so many people around me who care for me so deeply, and I never take that for granted. I am lucky that I have had time with my Mum to learn more about her, to develop our relationship, to ask her questions. Yes, I struggle and I suffer. I frequently wake through the night with thoughts, worries and flashbacks. I cry often. I get stressed. I don’t want to do into things any further then that because I select what I choose to publish online. I can assure you, though, that I am both deeply hurting, and deeply grateful for the situation I’m currently in.

I’m sorry this is so long, but I wanted to address as many points as possible. Thank you to anyone and everyone who has read it through. Thank you to all those who’ve sent me such lovely and heart-warming messages and comments. Thank you to everyone who continues to support me and thank you to everybody who has shared my writing.