You’ve seen the posts: “Click like” or “Retweet” to vote! An interaction with a post is a “vote” and after a certain amount of time the “votes” are tallied and a winner is declared. Magazines may use this type of crowdsourcing to decide their “best restaurants” or a photography web site may use it to choose a “cutest baby” photo.
I’ve been online, running web sites for myself and for others, since 1996 and this type of popularity contest is nothing new. It’s never going to go away because it’s inherent in our culture. It might be something we have to accept, up to a point. However, I take issue with using this type of “voting” for where we are now: choosing a “best” person from the online chronic illness community.
Taking A Hard Pass On the Online “Voting”
I’ve fallen into the trap myself. You get an email from an online entity, telling you that you’ve been “chosen” or “nominated” for being the best at Twitter, Instagram, Facebook, YouTube, blogging, or even podcasting. Then you’re asked to do things like register for an account and submit a bio and a photo. The next step is a direction to ask those in your community to “vote” for you.
No, thanks, I’ll pass.
Having a chronic illness is challenging enough. Being open about your chronic illness in order to find purpose in your pain, help others understand the disease, and prevent suffering for the newly diagnosed adds another layer of difficulty. Those of us with inflammatory bowel disease (IBD) are also often coping with mental health issues such as anxiety, depression, and poor self-image, which could be exacerbated or brought on by the disease. Being honest in a public forum about the realities of IBD exposes us not only to social stigma and mean Tweets, but also to the real-life issues of remaining employed and retaining health insurance.
On top of all this: must people with chronic illness who advocate for themselves and others now participate in online popularity contests? Against each other?
Voting In Actual Elections
Your worth as a patient advocate or as a person is not determined by your number of Instagram followers. It’s true that a following can help get the word out and educate others who are living with a disease, as well as their friends and coworkers, not to mention the general public. However, the “votes” on a Facebook post aren’t affecting change and making life better for people with chronic illness. What actually does that is voting in real elections.
As a community, those living with IBD need to vote to elect people who will do the work that’s necessary to improve our quality of life. This means that it’s important not only to register to vote, and then show up to the polls, but also to vote for candidates whose values align with those of the IBD community.
We Can’t Afford Apathy
Many people don’t like politics or political discussions and would prefer to stay away from them. That’s understandable and it’s a personal choice. But we all have to be aware that politics are a part of our everyday life and we must live with the outcomes of elections, whether we like getting involved in politics or not. It’s time to use our votes to ensure that people with IBD are included in the discussion when access to healthcare, funding for research, and patients’ rights are being decided.
Ready? Start Here
Don’t know where to start? Not registered to vote? Use the resources below to start your journey.
- Here’s where you can find out how to register to vote: https://www.usa.gov/register-to-vote
- Learn about elections and voting in your state: https://www.usa.gov/election-office
- Find out how to contact your elected officials: https://www.usa.gov/elected-officials/
Want To Do More? We Got You
Looking to do more? Find out how you can get involved from self-described political nerd and IBD activist, Brooke Abbott on the About IBD Podcast:
- Brooke and Amber attended the Digestive Disease National Coalition Public Policy Forum in 2017 and 2018. You can find out more about their events and legislative events on their site: www.ddnc.org/
- Sign up for the Crohn’s and Colitis Foundation Advocacy Network to get informed about advocacy goals: www.crohnscolitisfoundation.org/get-invol…advocate/
- See if your legislator is on the Crohn’s and Colitis Caucus. If not, write them and ask them to join! www.crohnscolitisfoundation.org/assets/pd…out-1.pdf