Social Media, Awareness & Campaigning

Social Media, Awareness & Campaigning

It’s hard to imagine my life without social media, awareness and campaigning now but, believe it or not, there was a time not so long ago that I didn’t associate with those things. I won’t lie, I was pretty naïve when I was first diagnosed with IBD. At a young 13, I very much took it in my stride not really knowing the impacts it would have on my life. As a result, I didn’t do much research, I didn’t speak to anyone about it and I didn’t know there were other people out there going through a similar thing. Looking back, I wish I’d have known different…

Once my condition began rapidly worsening, the isolation I’d set myself in just continued to heighten. Actually, I’d go as far as saying that I didn’t know enough about my condition until after my first emergency surgery aged 17 (If anything, I’m still learning now). Pretty shell-shocked waking up with a stoma (I didn’t really know what that was at the time either) is when I began doing bits of research and understanding what had really been going on with my body in the years leading up to that point. I began taking interest in charities in the field as well as unlocking a whole new community of forums etc online. Although this may not seem all that long ago considering where we’re at today, I couldn’t find many people in a similar scenario to myself to look to for inspiration.

Social Media

This is when I decided to make my Instagram account. At the time, this was something I was extremely worried about for a number of reasons. Putting yourself out there can be daunting enough without being a young, female new ostomate who still in the grand scheme didn’t really know much about what was going on. I was so scared of people I knew seeing the account, it was very much private and closely monitored. I simply posted health updates and what I was up to for my loved ones to see initially (to save energy in responding to so many messages daily – you know what it’s like when you’re ill or recovering). However, as my confidence grew, I started realising that the kind of content I was sharing was pretty rare and occasionally described as ‘brave’ or ‘inspiring’. I could see the positive effect it was having on people alike and a little community building – I can assure that community was (and continues to be) so so helpful to me in gaining confidence, understanding, knowledge and real bonds. As I began learning more and developing more confidence, I continued to share more in pursuit of helping as many people as possible which I guess, takes us to where we’re at today. My love for the community continues to grow and it’s incredible to see so many others sharing their journeys online now too.

My biggest problem nowadays is being strict with myself and the time I spend online being in my third year at University, I’d much rather be spending time chatting, sharing and responding on Instagram rather than having my head in the books – I can’t wait to get back on there once deadline season is over!


Being a young female with a stoma, I began recognising some of the taboos and stigmas within society and felt uncomfortable with some perspectives and reactions. Having begun noticing my social media activity has a positive impact on others amongst raising awareness for IBD, stomas and hidden illness – I couldn’t help but wonder if there was more I could be doing. I began doing what I could to take part in charity events, coffee mornings, awareness in the press and media – anything really that came in my way or that I stumbled across that I felt I could get involved in to help educate others.

I wanted to make an impact and help toward making positive change. With a new-found lease of life post-surgery, I set myself a challenge on top of the previously mentioned, to organise and partake in at least one challenging fundraising activity each year not only to raise money for good causes but, importantly, to show others that you can, even with a stoma.

I kicked this challenge off with a skydive just a few months after my surgery. Since, I have undertaken a number of challenges including climbing mountains, charity walks, a half marathon and even a 10km run through London in my undies!


In terms of campaigning, I always thought that my little voice wouldn’t matter however, let me tell you, EVERYBODYS voices matter and EVERYBODY can make a change. Over the years I have recognised a real need for particular changes and a great passion for getting the ball rolling in making these changes. Don’t get me wrong, campaigning can be very daunting but it can also be so rewarding when you can see a positive impact and changes being made for the greater good. I never really considered myself the ‘activist’ or the overly confident type especially when it came to public speaking or expressing myself, however, as I mentioned previously when I started noticing taboos, stigmas and inequalities I couldn’t help but begin speaking up about these things because as scary as it was, if nobody did, then how would positive changes transpire?

Now, I’m pretty comfortable with expressing what I stand for whether that be speaking in front of others, online, on camera, within articles, on the radio or anything else that may arise.

My Tips for Social Media, Awareness and Campaigning;

  • – Firstly, it’s so important to know that none of this is compulsory. You should never feel pressured to do or be anything more than you are – living and managing daily living with an illness or a stoma can be more than enough in itself to handle.


  • – If you’re thinking of reaching out via social media, on the whole I would highly recommend – you can be as public or as private as you wish with regards to what you disclose about your own self/condition and who can see it, however, the information, confidence and friendships can reap from it are


  • – Social media isn’t always a real and true representation of people’s daily lives – remember not to let this get you down or make you reflect on your own journey negatively.


  • – On the other hand, some use social media to document their worst times sometimes as a way of getting things off their chest and reaching out to others – either way, know this too and don’t let it scare you, get you down or hinder any of your own medical decisions. As cliché as it sounds, everybody’s on their own unique journey.


  • – You, and others can provide each other with personal experience, advice and opinion but, it’s so important to know that if you or they, need medical advice or help please always seek that of a medical professional such as a GP or specialist doctor/nurse.


  • – Depending on what you choose to share, it is out there for the world to see so always be aware of what you’re showing and saying – things can be perceived in many different ways and people will always have an opinion. If you think receiving some of this feedback will affect you negatively or the way people may view you then have a little think about this too. Most importantly though, know that everybody will always have an opinion whether you have 1 or 1000 people following your journey but as long as you’re comfortable and know you’re making positive impact then, that’s all that matters. (I have spoken in more depth with regards to receiving and responding to negativity in a previous post).


  • – Unfollow people that affect you negatively.


  • – I’ve said it already, but, I’ll say it again because it’s incredibly important. Use your voice to stand up for what you believe in, raise awareness and make a positive impact – your voice matters and certainly can make changes.


  • – There are so many awareness activities you can take part in. It’s important to know that they don’t have to be ‘wild’ or ‘crazy’ challenges – they can be whatever you’d like them to be. You can organise your own, or find arranged events to partake in. Useful places to find these are usually charity or organisation websites. You also don’t have to undertake activities alone, you can get the whole family involved if you wish (even the pets!) whatever you’d prefer!


  • – When it comes to promoting or campaigning, it can be easy to get caught up in the whirlwind of it all – it’s important to take a step back sometimes and decide what things you want to represent and stand for not what others want you to. Never stand for anything you’re not comfortable with.

Most importantly but arguably, most difficulty, always remember to take some time for yourself to rest and rejuvenate (easier than it sounds, I know).

Amber x

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