Today’s post is written by fellow blogger, and an online chronic illness friend of mine, Liv Hamil. I’ve been following Liv’s blog for a while now and love it. We decided it would be fun to write a post for each others blogs. So, as both of us spend a lot of time on social media, we decided to write about what social media and chronic illness blogging meant for us as someone with a chronic illness. Once you have read this don’t forget to check out what I’ve written on Little world of Liv, and make sure to check out her blog and social media, you won’t regret it.
If I said ‘picture someone with a chronic illness’ what would you see? You’d probably have absolutely no idea. Partly because chronic illness is something that affects a huge number of the population. It’s predicted that over 15 million people in the UK alone have at least one chronic illness, and chronic illness can affect individuals from all age groups. But one thing seems to be common among us: a lot of us turn to writing and social media.
Normalising Chronic Illness and Disability
When I was first diagnosed with ME, I honestly didn’t know what to feel. For one thing, I’d never heard of it- but mostly I was in total shock that I’d gone from being perfectly healthy to suddenly being diagnosed with a long-term (potentially life-long) condition. I felt so lonely, as though I was the only person in the world who was going through this. I couldn’t understand why it was happening to me- I had no idea how common ME is and I felt like I was completely alone. But then I stumbled upon an Instagram account from someone who also had ME. It felt like a huge discovery- here was another young girl who had the same condition as me, and not only that, but she was actually talking about it as if it was normal, as if there was no need to be embarrassed or ashamed of it. From here, I started reading more and more blogs which talked about living with a chronic illness, and I can’t describe how comforting it was. Every time someone described a symptom I had been experiencing, or talked about how damaging the lack of awareness is, I would feel a little bit less alone. It felt like someone was beside me, telling me that it was okay, that they knew how I felt. Eventually, I started my own blog, so I could share my own experiences.
Some chronic illnesses, like mine, greatly reduce the activity levels of the individual. Before my illness, I was either at university, working as many shifts as my job would allow, or generally just being out and about. Afterwards, a lot of this became impossible. A side effect of this is that my presence in the world became a lot smaller, and this is often why we don’t hear about people who live with chronic illnesses. It’s a lot harder to get your voice heard when you’re stuck in your bedroom battling a range of different symptoms. In this way, blogs and social media are an absolute godsend for people struggling in silence; it’s a low energy way to educate the world and to reassure other people that they aren’t alone. A huge reason for my decision to follow in the footsteps of these other bloggers, is that I’d had many conversations with non-disabled people in which they had said “I can’t even imagine what you’re going through.” This statement is obviously well intentioned, but it’s also not very helpful, because people can understand- it’s just that society doesn’t really value the experiences of disabled and chronically ill people enough to listen to them. Anyone can become chronically ill or disabled, so it benefits everyone to listen to us, and improve the way we treat each other.
Publishing my diary
I’ve always loved writing; when I was little, I would tell anyone who would listen about how I would be an author when I grew up, and I never lost this passion. I struggle with anxiety and depression, and journaling is the one thing I’ve found that really soothes me and lets my brain switch off. Blogging felt like a natural extension of my journal- albeit more organised and less scribble-y. At first I worried about people I knew finding it, and that no one would ever read it, but once I started writing I found that it didn’t really matter if thousands of people read it- even one person reading my work was enough. It gave me a purpose: on days where I would be unable to get out of bed, I would find myself thinking of ideas for posts, and getting excited about being well enough to start writing them up. For a long time, I felt like a washed up 21 year old with no real purpose; I was unable to work or do things which society typically sees as ‘useful’, but now when I feel like this, I look at my blog.
At first, a big worry for me was that people would judge me for sharing my experiences. I often share photos on really bad days or try to describe in detail how something feels, and I felt embarrassed by this. But the more I actually consider this, the more I realise it’s wrong. We often use social media as a highlight reel, sharing photos of ourselves only when we look our absolute best or when we are doing something really exciting. But social media can be so useful as a way to raise awareness, and I think it’s wrong that we shame ourselves on the days where we don’t look as polished. Nothing that I share on my social media or my blog should be embarrassing and I think that we really need to challenge our views on illness as a society. Even with everything I share, I still have a lot of admiration for people who share details about their IBS or IBD as this is something I am still afraid to do. It’s absolutely a two way street- I look to certain individuals on social media for comfort and inspiration, and in turn I hope that my work can help others.
Detoxing and backlash against social media
More and more, we are seeing criticisms of social media. A lot of these are well founded; social media can often present an unrealistic goal of perfectionism, as well as being used to encourage weight loss and unhealthy practices. But, as a chronically ill person, I can’t imagine taking a day off. Before I started my account, I would be suffering with symptoms with no idea if they were normal or worrying, and I felt an extraordinary amount of shame about being unwell. Now, I can ask a question on twitter or on my instagram stories, and receive countless pieces of advice or encouragement from other people. Obviously, we shouldn’t be giving medical advice to each other and I would never use social media instead of seeing a doctor, but most of the time I just want some reassurance that I’m not on my own in this.
Leaving the house has become a risky endeavour for me; even before the pandemic, planning to leave the house would require me to seriously weigh up the pros and cons and allocate time before and after for rest, as well as accepting that the following days would be bad. This has a big impact on my ability to have a social life- in fact, without social media, I would go days or weeks without speaking to someone outside of my immediate family. However, through my social media accounts, I’ve managed to form new friendships with people who I otherwise would never have spoken to. In a way this is a silver lining of my illness, because it has given me a sense of community that I have never experienced before. This isn’t even limited to people with ME.; people with any form of disability are welcomed within social media circles and offered encouragement, support, and people who are willing to read your posts having a rant about things.
Giving back to the community that took me in
It’s very easy to complain about the way society treats people with disabilities, and it’s also very justified. But something I’ve been trying to learn more about is how much I benefit on a daily basis from the people who have had chronic illnesses and disabilities for many years before me. People with ME alone have fought (and continue to fight) to be recognised, to raise awareness, and to eliminate treatments that are harmful. There is so much work to be done, but these people meant that I received a diagnosis far quicker than a lot of people. It also meant that I was lucky enough to have a few family members who were already aware of ME, meaning that they were supportive of me from the start. Every year, people raise money and awareness for ME, both online and offline, and this helps to fight stigma and push for more support for our community. Social media and blogging plays a huge role in this, and I can honestly say that I owe my current mindset to the people who normalise chronic illness online. It’s made me realise that, no matter how ill I become, I will still have a purpose, and I will still have this community.
The best moment for me was starting to receive comments from other people with chronic illnesses. After writing a post about grieving for the ‘death’ of my former self, I received comments from people saying I’d helped them put that feeling into words, and I can’t describe how it felt that other people were finding my blog helpful. Other blogs had really helped me come to terms with my diagnosis, so it was so important to me to provide that comfort for someone else. I don’t expect to change the world overnight or do anything drastic with my blog, but if one of my posts helps someone who is feeling as alone and lost as I felt last year, then that is enough.
