5 Ways to Use Social Media to Your Advantage
Social media runs the world when it comes to the way we communicate, learn about news and express ourselves. While it often gets a bad rap for being all-consuming and addictive, there are ways you can use it to your advantage as you take on inflammatory bowel disease.
When I was diagnosed with Crohn's in 2005, the online community seemed non-existent. Facebook had just taken off and people really weren't using it as a place to share their personal health journeys. As a new patient, I was unaware of any blogs or well-known advocates in the community. My, how times have changed. As someone who suffered in silence for over nine years as a TV news anchor, I never shared my story. Fast forward to now and I'm someone who blogs and is very open about my battle on Facebook, Instagram and Twitter. I have some words of advice to you.
1. Take pictures, journal...document your patient journey.
Just because you take photos, doesn't mean you need to share them, but keep them as a reference point, as something to look back on. A way to reflect on where you started and a way to celebrate how far you've come. During the first nine years of my disease, I didn't take one picture of myself in the hospital, preparing for procedures, taking medications, etc. I wish I had those photos. They help tell your story. You'll see a transformation in yourself from when you were diagnosed to where you are now. If you choose to blog or if your story is featured by a nonprofit or a popular magazine or website, oftentimes they want hospital photos as well as snapshots of your day to day life.
2. Connect with doctors and researchers.
Many of the top GI "gurus" are on Twitter and are readily accessible. You can ask questions, follow research studies, learn about key findings at conferences taking place across the world, you name it. Follow them for peace of mind, a trustworthy source you can count on. You will learn so much by reading their words and their advice. It's key you educate yourself about your condition so that you can be your own best advocate. It's also rewarding when doctors follow your story and give credence to what you have to say. After all, it's a two-way street. Open communication among patients and doctors is critical.
3. Start following hashtags on Instagram
By checking out hashtags having to do with IBD, like #crohns or #IBDawareness you are instantly connected with those living your same reality. One click and you can chat with someone across the world. By commenting on one picture, you can create a lifelong connection. You can become friends with those who "get it." Follow people's patient journeys and be inspired by their accomplishments and be there to lift them up when they're flaring. I was recently at a patient event in Chicago and met well-known bloggers in the IBD community. It was surreal to meet people face to face that I've been "following" for years.
4. Share your voice and your experience.
Use your social channels as a personal platform to spread awareness. What better way to teach your friends and family about what your day-to-day life entails. Be honest. Be candid. Be open. As you share, you'll find it cathartic and uplifting when you need support and when you want to celebrate a feel good day. It can be intimidating to share your personal struggles, but you'll quickly find out you're not alone in what you are going through. So many people can relate, and they will tell you so.
5. If you have questions, don't hesitate to reach out to fellow patients.
We all face fears and worries associated with our IBD. Chances are there are people out there who've gone through similar experiences and can offer insight. As a "Crohn's mom" myself, I've connected with so many women who are interested in starting a family, are pregnant or are moms themselves. It's incredible to have this lifeline of people who go from being perfect strangers to your closest allies. If you want to send a direct message or an email, do it! When I receive emails from those who read my blog it does my heart good when I can connect with them directly and offer them comfort.
Not everyone likes to share their IBD story, but take it from someone who's lived both ways (in the shadows and in the spotlight)... the spotlight makes it a lot easier and you can do a whole lot of good at the same time.
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