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Read This Before You Come After The Spoonie Community

I have a serious love-hate relationship with the internet. On one hand, I love that I can connect with other patients with just the stroke of a few keys on my cell phone. I love that it’s no longer difficult to find someone who understands you or what you’ve been through. I also love how strong the Crohn’s and colitis community is. Really the patient community as a whole. On platforms like Facebook and Instagram, we are seriously killing the game. I am so grateful for companies that allow patients to tell their stories on a larger platform, allowing us to educate the general public about our conditions.

What I don’t like about the internet

My Hate

I hate that it’s become “the thing” to pick on, bully or “bash” people. Everyone is bigger, badder, and bolder online. It’s honestly that simple. People say and do things online that they honestly wouldn’t in person. I understand that. But I don’t respect it. As a patient, sharing my story takes a lot. Even years into this “online world,” it still takes a lot. I share my story because it matters. As does yours. I would never laugh at you for your story and I hope you would have the same respect for me.

Negativity in the online space

I don’t really understand why people go out of their way to spread negativity online. It’s annoying. I’ve been through just about every stage of IBD and I understand it’s hard. I understand there are times we get depressed, even angry, but taking it out on someone who’s also struggling with their condition is never okay. You don’t know what someone is going through. You don’t know their life and to have the audacity to sit on a keyboard and bully them for a story they put their heart and soul into is just ignorant

Be mindful of the things that are said online

This may rub some people the wrong way, but honestly, I think it needs to. It needs to be said and if I have to be the one to stand up and admit it, I will take on that responsibility for my community. Imagine how it rubs other patients online when you come into a space they considered safe to spread hate. Do you think that makes them feel empowered? Do you think that makes them want to continue to spread awareness? I say this because I just ask you, any of you, all of you, to be mindful of the things you say online. Remember there is a person behind the screen and really think about how you would feel if someone were to say the same to you. There’s a huge difference between feedback and just downright disrespect.

Continue to share your story with others

With that being said, I want to encourage my fellow “spoonies” – my friends of the Crohn’s and colitis community to continue to share, continue to spread awareness, and continue to advocate. I know it’s not easy with all of the internet trolls, but I see you and your work is so needed and very appreciated. Don’t allow hate to distract you from your passion and the impact you’re making.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.