I’ve made friends with a few chronically unwell people on the internet since receiving my own diagnosis. As I’m sure I’ve mentioned somewhere before, it’s really helped to have people to talk to who understand. Whether it be the fatigue, insomnia, pain etc, it’s just nice. Something I came across recently was a friend of mine – who likes to raise awareness also – sharing a message she had been sent from someone. The message was pretty nasty and hateful, claiming that she was only looking for attention and that she should keep her illnesses to herself along with a few other uncalled for things.
I’ve no doubt there are also some people who see my posts or who secretly follow my story who sit and scoff and think ‘attention seeker’. I’ve made my peace with this because 1) I couldn’t actually give less of a **** 2) Some people probably do share things for the sole purpose of attention or pity and as long as they’re not hurting anyone else, let them get on with it I suppose, it’s not worth your time to care. And 3) I’ve actually come across people who get weird about my struggles or have tried to sort of “one up” me on who’s going through a worse time, it wouldn’t surprise me if they were the sort of people to think it. Ain’t nobody got time for that, here are a few reasons why I like to share my health story/journey.
Something that helped me massively through diagnosis and my journey with my IBD and stoma, was reading other peoples stories. Knowing other people had come out the other side or were going through the same thing but were still getting through every day was SUCH a huge comfort to me as no one I know in real life really knows what I’ve been through. Not that it’s nice to know someone else is suffering, obviously, but it does make you feel like you’re much less alone. It’s an amazing thought that I may have helped a suffering individual as much as someone else has helped me and I want to carry on helping others as much as I can!
I hadn’t even heard of my disease before my symptoms started. I’d vaguely heard of crohns but had never looked into it that much. It’s unfair to expect people to know about your condition unless you’ve specifically told them things. I’ve had a hell of a lot people message me or tell me that my posts have educated them massively from introducing them to the disease to giving them in-depth real life knowledge about living with it. I find sometimes that publicised articles give you text book or technical information which are fine but a lot of people don’t engage with or respond to information put out in that way. I also think they often undermine how damaging the disease is. I find personal, factual accounts and experiences gain a lot more attention as people are either caring or nosey (not in a bad way).
IBD and stoma life is also still a pretty taboo thing to talk about because it involves poo. It doesn’t smell nice, it doesn’t look nice and we all know that but we all HAVE to do it. It’s a perfectly natural bodily function so why is it such an embarrassing thing to discuss? I really don’t care about talking about it anymore, especially seeing as I now have a bag of poo stuck to my stomach for the rest of my life. Better that than dying.
A wise friend once said “I don’t want pity, I want understanding” and that’s exactly it. It’s become clear from feedback that a lot of people have previously not understood or have known how to treat an unwell friend. Not always in a bad way but I guess it’s all about communication. People can get nervous about asking or get frustrated because of an unwell persons limitations. I get it, I’m sure we’ve all been annoyed at someone for cancelling last minute or changing plans but with someone who is unwell long-term, it comes to a point where you either have to understand or walk away. It’s not cool to make someone feel guilty for things they can’t control.
Enough said, really.
As I mentioned previously, there is a weirdly lovely community feeling between people who struggle with illness or disability. I think it’s because most of us respect each other massively for trying to live normally despite our difficulties and limitations and we can empathise to a certain extent physically or mentally. That’s not to say everyone who struggles has that attitude as I’ve met my fair share of people who have tried to make out as if my struggles are irrelevant compared to theirs (really not cool). Everyone goes through their own battles. I’ve found some wonderful people in the IBD and stoma community though, some of my favourites being Hannah Witton, Katie May and Bec Blogs.
I completely understand that it’s not that simple. But I want to show people that it’s not impossible to live a good life after trauma and illness. I’ve been in such an awful place many a time where I was ready to give up and although I still struggle when thinking about what I’ve been through, the pride and admiration I have for my previous and continued strength and persistence is amazing. Whether it takes you 5 months or 10 years to recover or become content again, that light at the end of the tunnel will be worth it. One of my favourite quotes (which is from the song Sunshine by Kids In Glass Houses) is “stop wishing for the sunshine, start living in the rain”. It reminds me that life doesn’t stop for anyone or anything and you need that rain for the flowers to bloom afterwards.
It’s true that we’re naturally curious about other people, especially when they’re going through something that we’ve never experienced. I’m no exception, I love keeping up with other peoples journey through life. I remember when I posted my surgery story on my blog the day before and woke up from my surgery with thousands of views in two days. I enjoy talking about it because it’s part of me just like my arms, legs and head. My IBD and stoma are a massive part of me and my development as a person and I will never be ashamed of that.
I reflect sometimes and I do have moments where I’m like “Have I shared too much? Should I delete it all?” but then I think about all of the people who have told me that I’ve helped them, inspired them or educated them. It’s very much worth it.
How much of your life do you share online?
’Til Next Time,