What is Crohn's and Colitis Advocacy?
It's Crohn's and Colitis Awareness Week! The perfect time to think about: What does it mean to be an IBD advocate?
Advocacy is... Oversharing
As an advocate, I share a lot about my life on social media. I talk about things that might make people uncomfortable, on purpose. I raise awareness via my own social media accounts and via IBDSuperHeroes, because awareness matters.
There are still so many misconceptions about inflammatory bowel disease and so much stigma around anything that involves bowel movements. We will never normalise the many symptoms of IBD if we don’t talk about them frequently!
Advocacy is... Working towards a better future for IBD
I consult with healthcare companies to help them understand that our journey is often not a linear one. We can be repeatedly jumping from remission to a flare in a matter of days, and having our lives turned upside down because of it.
Treatments are often trial and error, and whilst that might not matter to a pharma company, it matters to us. We want to get back to our normal lives, as fast as possible. Treatment side effects DO matter because many of them can be daunting for people. They can also limit our quality of life; when we have to avoid any risk of infection by a standard virus, or have to hide in the shade outdoors. The route of administration DOES matter because that can be life-limiting too! Losing half a day every few months to sit in treatment units is not the ideal life, is it?!
I’m a trustee for a charity that invests 100% of donations into research, to improve the lives of people with Crohn’s disease and ulcerative colitis. I take part in and share research opportunities whenever I can, to help improve future treatments, care, and resources.
Advocacy is... Support
I write blogs to help validate how other people are feeling, and I share my own tips and tricks for rubbish situations people might find themselves in. I run a support group for people with IBD because I KNOW how isolating it can be, and I try my best to comment on every single post.
Advocacy is... Education
I’ve spent so many hours curating documents with resources for things like mental health support and treatment options. I try to keep up to date with the latest research developments, and I have a huge list of bookmarked websites and journals so that I have something ready for the most commonly asked questions.
Sometimes, I feel like a literal signpost! And this is just the stuff that people probably see me doing!
Advocacy is... A full-time job
Being an advocate sometimes means being selfless. I’ve spent countless days and nights talking to people who just need a little support or guidance, via social media, messages, and calls. Sometimes it takes away from my personal time, and I let it, because if it makes a difference then it’s worth it!
Being an advocate is genuinely a full-time job, and let’s be honest, it doesn’t pay that well!
Advocacy is... Rewarding
I am proud to do what I do because at the end of every day I know that I’ve done something that matters. Something that might actually make someone’s journey easier.
Awards for advocacy make me feel really uncomfortable. I have been nominated for a few in the past and I end up feeling torn because I really don’t want to ask people for votes, but I don’t want to dismiss the effort of the person that bothered to nominate me, either. So, I usually post about it once! I won an award in 2015 and it required television interviews and attending a formal event. It was the first time in my life that I had ever experienced anxiety, and I hated every single second of it.
The ultimate reward in IBD advocacy
I really don't like the attention, which is probably quite hard to believe because I put myself out there so much. But, I do that for a cause, because it might validate someone else or inspire them in some way. I have seen advocates ask/hint for awards, and it bothers me. I know it shouldn’t, but it does. I don’t feel like I deserve an award. For me, the MOST rewarding thing is when I see someone turn a corner, or when someone messages and says thanks for helping them.
Do I deserve an award for doing what I love doing? Something which I also get a lot out of? Sometimes, helping someone else is the only worthwhile thing I did in a day! It makes me feel like I have a purpose. So no, I don’t want an award. Being an advocate is rewarding enough in itself.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?