Writing

My first HuffPost blog

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Here’s a link to my first HuffPost blog!

https://www.huffingtonpost.co.uk/entry/unpredictable-me-life-with-multiple-sclerosis_uk_5ac7dbf6e4b01e0b61b762a6?utm_hp_ref=uk-lifestyle

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Social media…a force for good?

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Social media is an integral part of life for many of us these days and despite recent revelations about how our data may have been used (and the fact it can be incredibly addictive) it can be a really positive thing too. It can bring like-minded people together for a cause, interest or hobby, offer support for people experiencing the same condition or situation as well as enable friends and family separated by distance to keep up with each other’s lives. It can also be a fantastic platform for advertising small businesses, social or fundraising events and it can help people who are isolated to feel like they belong to something, but on the flip side, the temptation to compare our lives to other people’s posts online can leave us feeling decidedly inadequate!

This is because we only generally share the best version of ourselves online. The flattering photo of us looking as close to fabulous as possible or the picture of our child with the award they’ve won, smiling sweetly at the camera. However, we are less quick to share a photo of us looking decidedly rough or of our child slamming doors and throwing a tantrum, because we don’t want people to see that side of our lives. We want the airbrushed version. Filter well and truly in place.

And what about when people we consider friends share pictures of a night out we weren’t invited too!? Or when someone posts photos of their exotic holiday when we are struggling just to pay the bills? Or when it seems everyone is sharing news of their pregnancy and what we want more than anything is to have a child, or people announcing news of their engagement when we long to be married? It’s in your face, it’s in your hand, it’s on your phone and yet it can be strangely compelling to view these selected snapshots of other people’s lives. Constantly!

For the bereaved or the separated it can be particularly painful. On the one hand there is great potential support available online via groups on social media, but to access this you will no doubt have to negotiate the updates from other people’s lives. Other people’s lives that carry on regardless, unaffected by the loss you feel so deeply and that hurts so much. As time passes it may becomes less painful and less all consuming, but sometimes to see a picture of a smiling happy family with a mum, dad and children doing something fun together is too much to bear. It’s not jealousy, it’s just capturing something that you don’t have any more.

So how can we make the social media experience a more positive one? Well, we can change the settings on our phone so it isn’t pinging every time someone shares a tweet, uploads a photo or posts an update. That way you’re not tempted to check what it is (that funny meme or cute cat video can wait to be viewed later!) There is also the ‘unfollow’ option. So if a certain person’s posts upset you or wind you up…stop following them! (The option on Facebook also means you don’t have to ‘unfriend’ them, but it will stop the person whose posts irritate you clogging up your newsfeed!)

Maybe consider finding an online group for an interest you have, or a cause you’re interested in. Use social media to connect with other like minded people in a positive way. Or maybe consider starting something yourself! Is there a need for a support group for something? (Beautiful Stationery Addiction?!) or do you want to find people who share your love of something? (Beautiful Stationery?! Do you see a theme emerging?) Social media can be a fantastic way of reaching a huge number of people who have similar interests or experiences to you.

The charity I started for bereaved children certainly wouldn’t have reached as many people, as quickly as it has, without the use of social media. When I first had the idea I was able to raise the money I needed to get started in just over 24 hours, by sharing a crowdfunding page on Facebook. I also set up a page for the group and could share it, reaching far more people than I would’ve done by putting up posters and sending out letters. It has also been a great way of finding other organisations doing similar things in different parts of the country as well as linking up with other local groups and charities.

So, for all of the bad press and negativity, why not decide to take control of social media and choose to use it for good? You might be surprised what you find.

Why I write

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So, you might be wondering why I started writing these blogs that occasionally appear on your Facebook newsfeed or maybe you’ve never given it a second thought, but I’m going to tell you anyway! (So if you don’t want to know the reasons…look away now!)

To help others

The main reason I write my blog is to (hopefully!) help others in similar situations to those I find myself in. It’s certainly not a pity party. I try not to moan and I do aim to inject some humour if I can. Personally I find it reassuring to read about someone who has had a similar experience to me, so I hope others find it helpful too. I have written about the reality of living with MS, bereavement, single parenthood and setting up a charity along with others on anxiety, anger and changes to the benefit system. My hope is that others will find reassurance in reading my experiences, even if it’s to make them feel that they’re making a much better job of it than me!

Raise awareness and challenge preconceptions 

I love to write to raise awareness about different topics that the general public may be unaware of. Fortunately most people don’t know what it’s like to live with a chronic condition, especially when many of the symptoms are invisible. So I try to explain what that’s like so that people have more of an insight, because there are actually many people living with all sorts of ‘hidden’ illnesses and it would be great if there was more of a wider understanding. 

I like to try and challenge preconceptions too. Following my experience of bereavement, both personally and through the charity I run, I realise that the general understanding of grief and more specifically how children grieve is often misunderstood. I hope that some of the blogs raise awareness about the needs of these children and families and how we are seeking ways to meet them. 

It’s also a good way of talking about issues that are often more difficult to discuss face to face, like mental health issues. It’s a whole lot easier to write it down and share than it is to drop it into a conversation, but it means that people who are experiencing similar difficulties know they’re not alone and might even feel able to ask for help or at least talk about how they are feeling with someone else. 

It is also a good platform to raise awareness about political issues like changes to the benefits system, the NHS and education. I get to vent my spleen about injustices! 

It’s therapeutic 

I’ll be honest, I do find writing therapeutic. I have developed a love of writing that I’ve never had before. I write privately for my eyes only too, I don’t share everything publicly, but there are occasions that I think it’s worth sharing a version of my thoughts more widely. 

However, these blogs are not me spilling all of my innermost thoughts onto the screen, they are the edited, relevant highlights. It is therapeutic as in positive and helpful, but not therapy as in treatment. I firmly believe that the internet is not the place the bare your soul, but I think a little self disclosure can be helpful. 

Because I have been encouraged to!

It’s all your fault! I wrote my first blog to mark World MS Day and was overwhelmed by the positive feedback I received from people…not just my friends (who have to be nice…it’s in the job description), but even some people I didn’t know!! So I thought I’d give it another go and that was well received too! So, it grew from there. I don’t publish blogs regularly, but more as topics arise and whilst the feedback remains positive I’ll keep doing it 🙂

Confidence  

I never felt I was very good at writing at school. I got a respectable B in my GCSE (and we won’t mention the A level result) but I was never confident in my ability. I got an ok degree, but again the writing didn’t come easily. It was always a challenge to reach the word count required for essays, but now I often have to cut down what I write because it’s too long! I think I found it difficult because it felt like it was all opinions about stuff that didn’t really matter. Whereas this stuff does matter. It matters that people going through tough times don’t feel alone. It matters that people have a better understanding of disability and grief and lone parenting. And if sharing a little of my experience provides an insight into those areas or helps to reassure someone in a similar situation then I think it’s worth it. 

What’s next?

So what’s next? More of the same I think. I will continue to write about topics, causes and ideas as and when they arise. Regular readers will know I have been asked to write guest blogs for the national charity MS-UK, so that’s an exciting opportunity too. They say everyone has a book in them, I’m not sure about that, but a few hundred words in a blog? That I can do.