May 19, 2017, is a big day in the IBD community. It’s a day where 38 countries from 4 different continents come together to raise awareness. There are fundraisers. Walks. Events. Obnoxious purple lights. Because it’s World IBD Day.
Now, I’m sure you’re thinking, “Seriously? Why do you care so much about this random day? Nobody even knows it exists. Stop being so dramatic!”
But that’s exactly what I’m getting at; if nobody knows it exists, how can we raise awareness? If nobody knows, then they can’t possibly care, and if nobody cares, then how can we fund research?
Now, while there are plenty of IBD awareness-focused events throughout the year, people with these conditions tend to stay pretty closed up about their illness. But why? Why don’t we put ourselves out there, deck out in purple IBD awareness clothes, and share our stories? If we want a cure so badly, why do so many of us hide behind the curtain of “I’m fine?”
I’m not saying that there aren’t amazing people who already do these things. There are, and I am so impressed by them. Because just like all of us, those amazing individuals who raise awareness want a cure. But unlike most of us, they actually work to find one.
To understand why IBD-awareness is such an unknown cause, I have listed 3 main concepts that I feel are driving our silence. They include:
1. Fear and judgement: People are afraid of putting themselves out there and exposing a part of them that may have been hidden for a long time. They don’t want people to think differently of them and think of them as “that sick guy” instead of the “normal guy” they were before people knew they had IBD. We get so caught up in how others will think of us that we often don’t do the things we want to. Some of us would love to dress up in purple tutus, hand out IBD wristbands, and share way too much information about ourselves. But when we think about how others will react, we get so scared they will think of us differently; as overdramatic, or weird, or crazy, or “that sick person,” that we stop short.
2. Embarrassment: Even more so than fear, people hide their illness out of embarrassment. It seems like there is this unspoken code of “ooooh, IBD has to do with gross body parts like blood and guts and stuff. We really shouldn’t talk about it because it’s just so embarrassing.” But, this is so unfair! IBD patients didn’t choose their disease. They didn’t choose what it would affect and what it would do to them. So, we shouldn’t have to hide the truth just because society views our condition as an embarrassing problem. Sure, there are things you might want to keep to yourself, and there is a time and place for all comments, but that doesn’t mean we should keep IBD a secret from others. Additionally, raising awareness is always considered an awkward thing. I mean, having people buy bracelets with disease names on them is going to be kinda weird. But, these things are only awkward because we make them awkward! We get so embarrassed about our condition that we make other people embarrassed too. I’m not gonna lie; from a textbook, IBD is kinda gross. But so is the flu, and colds, and all sorts of other diseases. A lot of the reason why IBD is so unknown is because we are embarrassed to talk about it, and nervous that others are going to think of us differently, so we stay silent. But being embarrassed and hiding in the corner isn’t going to get any support. So, before you raise awareness for any condition, you need to accept it yourself. When people realize that you are a real, confident person with a real, annoying disease, they will be more compelled to support you.
3. It’s invisible! I’ve touched on this many times before; IBD is invisible! Nobody can see it. That means nobody will know unless you tell them. Whether you are trying to raise awareness for an invisible disease or just telling a teacher about your condition, it’s important that you explain how it affects you, not how it’s described in a science book. You can’t expect that people will just understand what you’re going through, because they can’t. When you look fine on the outside, people are going to assume your life is perfect and you are feeling great. This leaves it up to you to explain to them how IBD affects you. While this may be awkward at first, it’s much better than trying to hide your disease, especially when you aren’t feeling well. Although it’s annoying to have to explain your complicated situtaion to people you don’t know very well, it’s the only way you are going to help them understand. We can’t expect others to automatically know what IBD is and jump on our awareness campaign. We have to work for it by showing them that although IBD is invisible, it is real, and thier support is needed.
So, now that the main reasons for hiding in the “IBD closet” are identified, you can now figure out how to overcome them and raise awareness in a way you are comfortable with. Below I have listed my top 5 tips on creating a platform and supporters to help you raise awareness for not only IBD, but any cause close to your heart.
- Pick a cause you connect with! Don’t try to raise awareness for something you don’t care about and know well, no matter how “cool” it will make you seem. Support causes that are close to your heart, especially those that deal with groups you are a part of.
- Share your story! Whether it be written, in a video, in person, or through pictures, when you are building a platform to raise awareness, you need to show people who you are. Now, I’m not saying you should put together a depressing tale about how IBD ruined your life just to get people to shove sympathy in your face By sharing your story, you are showing people that you are a real person with a real life and real disease, and that IBD isn’t just paragraph 3 on page 142 of the biology textbook. The goal of this is to get people to empathize with you, for they can see a glimpse into your life.
- Let people help you! This blog that you’re reading right now is an awareness platform. While I thought of, designed, and created it myself, I didn’t do it completely alone. My parents, friends, and everyone reading this have given me tips, suggestions, and encouragement to continue. Whether you are attending a CCFA walk, running a race, selling cookies, making posters, or just sharing your experience, it’s important to allow others to help you. Turn your solo race into a team event. Invite your friends over to sell the cookies with you. When you let other people help you, not only is it more enjoyable for you, but you can create a bigger project and reach a larger audience.
- Choose a platform. Whether it be a walk, a race, a website, a YouTube channel, a bake sale, or anonymous flyers, choose a method of spreading information/awareness. You don’t have to go crazy and make a massive campaign that travels the world informing people about IBD. However, try to do something you might not have thought of before. Before I started this blog, I had thought about it for a long time but always considered it too big, or too out there, but now I’m so glad I went for it. Keeping this in mind, you have to understand that your idea might flop, your team might be the smallest one there, your cookies might not sell, and your posters won’t be seen. But this doesn’t mean you should give up; sometimes it just takes a few tries before people start to support you.
- Make it unique. When starting an awareness project, whether it be big or small, make it personal to you. Even if you do the standard lemonade stand with “all proceeds to charity,” tell your customers why their support is meaningful to you. Tell them where their money, time, and support is going. If you want to start an awareness project, it doesn’t have to be big. It doesn’t have to be fancy. It doesn’t have to be expensive, or complicated, or the most amazing thing the world has ever seen. But it does have to be bold. If you want support, you need to attract attention. Coming from somone who hates to be in the middle of the crowd, I’m sure many of you are thinking “oh, guess I won’t be doing one of these projects any time soon.” But I don’t mean attract attention to yourself; you need to attract it to your cause. Show people why IBD awareness matters. Show them why their support is needed. Show them how they can help, and trust me, they will.
With May as IBD awareness month and World IBD Day just around the corner, now is the time to raise support. If you are able, take it upon yourself to do something, no matter how big or small, to raise awareness for Crohn’s and Colitis. Put yourself out there, and show people why they should care. Don’t be afraid of what others will think. Don’t be embarrassed by a disease you didn’t choose to have. Don’t hesitate to make IBD visible. Step out of your comfort zone a do something to make others care. It doesn’t have to be big, or shiny, or loud. But make it bold, and show people that they, too, can make a difference.
1. I completely understand if you are unable to or uncomfortable raising awareness by the methods mentioned above. In no way do I condemn you if you are afraid, embarrassed by you condition, and/or not actively trying to spread IBD support. I am only encouraging others who are able/comfortable to try to step up their IBD game because we can all do something, no matter how small, to help support and spread awareness.
2. I do realize that there are tons of amazing individuals who already do so much for the IBD community, and I am not saying that their work goes unnoticed. I am simply providing guidance for people who want to/know they can do more to raise awareness but do not know where to start.
3. Once again, I am not a doctor or any sort of professional (unless eating candy counts). I am just a kid who wants to help make a difference and spread IBD awareness. If you do not agree with me and my opinions, that’s fine. These are just my ideas, my perspective, and advice that I think is helpful for people trying to support any cause.