Ryan Piansky, a PhD student at the Georgia Institute of Technology, has had eosinophilic esophagitis (EoE) since he was 2 years old. The condition causes swelling in your esophagus from too many white blood cells. Certain food allergies – meat, nuts, apples, rice, and sweet potatoes, in Piansky’s case – trigger EoE. While it’s possible to lead a normal life with EoE, you have to take some extra steps to plan ahead.
Growing Up With Eosinophilic Esophagitis
Many people with EoE are diagnosed at a young age. “From the day I was born, I was really, really sick,” Piansky says. “Throughout my entire infancy I had failure to thrive, I would throw up, I would refuse to eat, I wasn’t gaining weight or growing.”
As Piansky got older, his food allergies impacted his life in different ways. But the good news is that EoE is a treatable disorder. “People can live a really happy and healthy life,” he says. “I think it’s super important to understand that this is not the end of the world. This shouldn’t derail your life. You can live the exact life that you want to lead. EoE just makes you think a little more about things.”
With EoE, you might have heartburn, chest pain, regurgitation, or trouble swallowing. Because of these symptoms, Piansky has had to make certain adjustments throughout his life:
Some foods are off-limits. After his diagnosis, Piansky’s mother began to work with him to find meals that he could safely eat.
This later helped develop Piansky’s love for baking and cooking. “That hobby started when I was young. As I’ve gotten older, and tried more foods and worked with my doctors to get on the right mix of medicines. I’m able to eat more,” he says.
At first, experimenting with ingredients was a way for Piansky and his mother to learn how to make nice-tasting recipes that worked with his allergies. “Living on my own, I still really enjoy baking and cooking. Now that I have more foods available to me, I’ve really gotten to enjoy trying a bunch of new things.”
It might be hard to attend social events at times. If you have EoE, your symptoms might keep you from some activities. If an event revolves around food, you might be hesitant to go because it’s important to stay away from foods that’ll trigger your condition. This may mean you prefer to cook at home more often. But if you plan ahead for outings, it’s still possible to participate.
“Throughout elementary school and in high school, I was sick a lot so I would miss days of school. I wouldn’t get to see my friends for sometimes a week at a time,” Piansky says. “Traveling is also tricky if there was a school trip or an overnight trip. I wasn’t able to go on my senior trip because we were going out into the middle of the woods. There wasn’t going to be food that I’d be able to eat there. It’s really challenging to bring 3 days of food with you on a school bus.”
Tiredness may affect you during parts of your life. “All throughout high school, I was on a feeding tube. It was a little annoying because you have to keep that refrigerated and use certain supplies,” Piansky says. “During this time, I was exhausted. Because of that, I couldn’t really do sports in high school. Luckily, I’m able to be more active now.”
How Can You Manage Your Social Life With Eosinophilic Esophagitis?
Make a game plan. “EoE can definitely impact your life a lot. But the really important thing to remember is that it doesn’t need to if you can plan ahead and you can make things work,” Piansky says.
This might mean you have to pack your own meals beforehand or check a restaurant’s menu to see if you can eat the dishes they serve.
“If you’re feeling well enough to make it out, you can lead a normal life – just with a lot of extra planning on top of it,” he says.
Make sure you have the energy. In order to have a good time out, you want to make sure you have the strength.
“One thing that’s really important to think about is if [going out] is necessarily the best decision. Because if you’re not feeling well, you don’t necessarily want to push yourself,” Piansky says. “It’s important to take time for yourself as well.”
“I spent years where I thought I should be able to do all of these things like other people. But I realized I needed to prioritize myself and take care of myself,” he says. “This might mean I need to stay at home or sleep in a little bit, just to get energy back.”
Keep a good mix. Ultimately, you want to find the sweet spot between rest and recovery and a healthy social life. “With EoE, it’s really a balancing game of trying to figure out how much planning and work can you do to make sure you’re leading the life you want to live,” Piansky says, “and making sure it won’t impact your health and make you sicker than you really should be.”
Chat with your friends. “In high school, my friends knew I had this disorder, and they knew about my food allergies. If we were ever planning to go out to dinner, they’d defer to me to select where we went to eat,” Piansky says. “That way I could find a restaurant that had things I was allowed to eat. That would be great for me so then I wouldn’t have to bring food.”
Don’t be afraid to tell your friends about your EoE. A good friend will help you take steps you need to enjoy your time out.
“If I was going to stay overnight at a friend’s place, they’d let me know ahead of time if we were going to eat. Or they’d ask if they should pick up anything to have in their house so I can snack on,” he says.
“Communication with your friends is really, really important. That way, we can make sure we’re all on the same page. You’ll have the information you need to make sure that you can have a successful time out.”
Manage your expectations. You don’t want to force yourself to attend every event if it truly doesn’t work within your health needs. “Sometimes my friends would have plans to go somewhere after school,” Piansky says. “But if I didn’t bring any extra food, I wouldn’t be able to eat anything. I didn’t want them to change their plans, so I’d just see them next time.”
“It’s important to make sure they understand it’s not an issue that they’re doing something that you can’t participate in. But for your health, you need to take a step back for this afternoon. I think that clear communication is really helpful.”
Save your energy. Even when Piansky was on his feeding tube and had low energy, he was able to do the things he cared for most. “I would spend a lot of time really tired, which definitely impeded my ability to go out and do things with people,” he says. “But for things that I was excited about and I wanted to spend the energy on, I could absolutely make that work.”
Talk to your doctor. You may have to make lifestyle changes with EoE, but your social life shouldn’t suffer. “The best thing to do is talk to your doctor if you’re having any symptoms that are really impacting your life. Discuss what options there are so you can move forward and thrive.