Every morning you wake up not knowing what the day will be like. Will there be pain? Will my body be OK today? Will I be alone? These are just a few of the thoughts that pass through someone’s mind when they are living with Crohn’s disease or ulcerative colitis.
Most people don’t understand how hard these diseases are to live with and don’t know that they impact the entire body. This is why it’s so important to be open about your disease and create a network that is there to help. I know that sounds scary for many people. It took me a while to get to the point where I was completely open about my disease. But once I did, I realized that I was surrounded by incredible people who are understanding and want to help.
Would this have been the case years ago? No. When I was in high school, or even as a young adult, I didn’t think that I’d be able to share my secret with anyone. My unwillingness to share may have simply been because I was younger, though I actually think that there was another, even bigger reason: the lack of social media.
We now live in a new world where anyone at any time can share their story, raise awareness for a disease, and open up slowly about what they might be battling from their computer or smartphone. This gives them time to build confidence to discuss their disease in person. With social media, we are never alone. There are groups for every disease with members all over the world. And they can talk with each other at any time. It’s an amazing tool for a person living with a disease.
Because of the social media boom, people know that everyone is battling some disease. If they aren’t battling something themselves, then they are likely to know of someone who is. I’ve talked to high school students who act like adults when it comes to dealing with diseases. Ever see those heartwarming stories on social media and other news outlets? Because so much awareness is brought to the world every day, people are now more accepting than ever.
With acceptance comes a freedom that people didn’t have before. They no longer feel that they have to live alone or keep a secret from their loved ones. People can share their stories and create a network around them. Here are a few tips on how to create a good network:
Talk about your disease openly: People are smart. They’ll be able to tell if you are hiding something, which will make it harder for them to help you with your disease. So be open — it will make it easier for everyone around you.
Laugh whenever you can about your disease: I’m not trying to downplay the seriousness of your disease, but no one wants to be around someone who can’t sometimes have a sense of humor about their condition. It’s OK to joke around. It will not only make you appear confident with your disease, it will also allow others to see that you’ve accepted it.
Cry if you have to and don’t feel bad about it: Living with a disease isn’t easy, and at times it can bring even the strongest people down. The best thing about this is that it’s OK! We are allowed to have down days, and everyone around you knows it, because they do, too. It’s just life.
Put in the work and do everything you can do beat your disease: One of the hardest things for a network to see is when you’re not trying to do everything you can to overcome your disease. If you aren’t going to put the work into beating your disease, why would they want to help you? It’s important to work at helping yourself every day.
This is just a starting point to creating a powerful and supportive network around you. It won’t be easy, and you’ll have to learn as you go, but once you figure out how to build your network, you’ll be happy that you did. Life gets easier when you have a supportive network around you. You might even see something amazing: your return to health. Why? Because it’s much easier to deal with a disease when you have a team — it creates less stress, fewer triggers, and a better life.
Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more. Find Brian on Twitter @BrianIIF.