As part of my blog (and as a few of you will know), I also have an instagram account for meandmycolitis (go and find me if you want to have a look). When I started I felt that having a social media presence was really important, lots of people use instagram and people were likely to use this in order to find the IBD community online. And so we created meandmycolitis on instagram, but stuck only to instagram as it seemed like the best social media platform.
Anyway, I posted various bits and pieces on my instagram, mainly just links to the blog, a few pictures of bits and pieces and my life in general. When I first started I had some wonderful conversations with people about life with a long term condition. There were a number of other people with long term conditions that engaged with my posts and we had really good conversations about it managing to share some advice and support along the way. It was good to be able to engage with people that had the same condition as me, and see whether some of the symptoms that I had were the same as others. It can be reassuring to know that you are not the only one but also not going slightly mad as some of the feelings cant be proved.
While this can be reassuring, social media can also work against you. There are a lot of people on social media within the community who want to focus on the negatives rather than the positives. If you allow this negativity to become part of how you think then it can really affect how you are thinking and feeling. When people are talking about their own experiences you have to remember that everyone is different and that no two people’s experience of Ulcerative Colitis (or any long term condition) will be the same. This was something I was aware of from when I was looking for blogs about Ulcerative Colitis. As long as you are aware of this and you are able to manage your emotions regarding the negativity then you should be ok.
The other negative side to social media that really annoyed me was the fact that there are some weird people on there! I was very open in my blog about the fact that I have a partner (Jordan) and I believe it would be clear that we are happy together and happy in our relationship. On my instagram after a couple of weeks I had a number of men (sorry but it was only men) messaging me wanting a ‘chat’. I usually engaged these chats to begin with in case they actually wanted to talk about IBD related things. Most of them did not and some of them were highly inappropriate. I was trying to be polite and so I would politely say that I didn’t feel comfortable talking to them in that way and I got a lot of people responding to me in ways that were not appropriate. I found it really disappointing that a page that was created to help people was then being used by people to try and harass me. When they didnt take me politely turning them down, I started telling them a straight ‘no, stop talking to me’ and they still persisted.
I ended up writing a long post about it on my instagram which is not something I ever envisaged having to do. I was quite upset by the whole situation and it has made me more wary about who I talk to online. I ended up having to block people and remove them which I truly never wanted to do.
Anyway, social media can be really positive but as with everything there are positives and negatives and it is so important to be aware of them. I’m on the positive train with my social media and I will always engage with people that want to have appropriate conversations. Not for people that want to have a flirt and not take no for an answer…