Ryan Piansky, a doctoral candidate at the Georgia Institute of Technology, has had eosinophilic esophagitis (EoE) since the age of two. The condition causes swelling in your esophagus due to too many white blood cells. Certain food allergies – meat, nuts, apples, rice and sweet potatoes, in Piansky’s case – cause EoE. While it is possible to live a normal life with EoE, you need 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 very sick,” Piansky says. “Throughout my childhood, I could not thrive, I would vomit, I would refuse to eat, I would not gain weight or grow.”
As Piansky grew older, his food allergies affected his life in several ways. But the good news is that EoE is a treatable condition. “People can live very happy and healthy lives,” he says. “I think it’s super important to understand that this is not the end of the world. This should not derail your life. You can live exactly the life you want to live. EoE just makes you think about things a little more.
With EoE you may experience heartburn, chest pain, belching, or difficulty swallowing. Because of these symptoms, Piansky had to make certain adjustments throughout his life:
Some foods are off limits. After his diagnosis, Piansky’s mother began working with him to find meals 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, tried more foods, and worked with my doctors to get the right mix of medications. I can eat more,” he says.
In the beginning, experimenting with ingredients was a way for Piansky and his mother to learn to create great-tasting recipes that worked for his allergies. “As a self-employed entrepreneur, I still really enjoy baking and cooking. Now that I have more food available to me, I’ve really started to enjoy trying a lot of new things.”
It can sometimes be difficult to attend social events. If you have EoE, your symptoms may prevent you from doing certain activities. If an event revolves around food, you may be hesitant to go because it’s important to stay away from foods that could trigger your condition. This may mean cooking at home more often. But if you plan trips ahead, it is still possible to participate.
“During primary and secondary school I was often ill, which caused me to miss school days. Sometimes I couldn’t see my friends for a week,” Piansky says. “Traveling is also difficult if it is a school trip or an overnight stay. I couldn’t go on my senior trip because we were going in the middle of the woods. There would be no food I could eat there. It is really a challenge to take food on the school bus for three days.”
Fatigue can affect you during certain parts of your life. “I was on a feeding tube throughout high school. It was a little annoying because you have to keep that refrigerated and use certain supplies,” says Piansky. “During this period I was exhausted. Because of that, I couldn’t really play sports in high school. Fortunately, I can now be more active.”
How can you manage your social life with eosinophilic esophagitis?
Make a game plan. “EoE can certainly have a lot of influence on your life. But the most important thing to remember is that you don’t have to, as long as you can plan ahead and make things work,” says Piansky.
This may mean packing your own meals in advance or checking a restaurant’s menu to see if you can eat the dishes they serve.
“If you feel well enough to make it, you can live a normal life – just with a lot of extra planning on top of it,” he says.
Make sure you have the energy. To have a good time, you want to make sure you have the strength.
“One thing you really need to think about is whether [going out] is necessarily the best decision. Because if you’re not feeling well, you don’t necessarily want to put pressure on yourself,” says Piansky. “It is important to also take time for yourself.”
“I spent years thinking I should be able to do all these things just like other people. But I realized that I had to prioritize myself and take care of myself,” he says. “This may mean I have to stay home or take a nap, just to get my energy back.”
Make sure you have 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 where you’re trying to figure out how much planning and work you can do to ensure that you’re living the life you want to live,” says Piansky, “and making sure that it doesn’t impact your life. health and make you sicker than you should be.”
Chat with your friends. “In high school, my friends knew I had this condition, and they knew about my food allergies. If we ever planned to go out to eat, they would let me decide where we were going to eat,” says Piansky. “This way I was able to find a restaurant that had things I could eat. That would be fine for me, then I wouldn’t have to bring any food.”
Don’t be afraid to tell your friends about your EoE. A good friend will help you take the steps you need to enjoy your free time.
“If I was going to spend the night with a friend, they would let me know in advance if we were going to eat. Or they asked if they should get something to have in the house so I can snack on it,” he says.
“Communication with your friends is very important. That way we can make sure we’re all on the same page. You will then have the information you need to ensure you can have a successful time-out.”
Manage your expectations. You don’t want to force yourself to attend every event if it really doesn’t fit your health needs. “Sometimes my friends had plans to go somewhere after school,” Piansky says. “But if I didn’t bring extra food, I wouldn’t be able to eat anything. I didn’t want them to change their plans, so I would just see them next time.
“It’s important to make sure they understand that it’s okay for them to do something that you can’t participate in. But for your health, you need to take a step back for this afternoon. I think clear communication is very useful.”
Save your energy. Even when Piansky was on a feeding tube and had little energy, he was able to do the things he cared about most. “I spent a lot of time feeling very tired, which definitely hindered my ability to go out and do things with people,” he says. “But for things that I was excited about and wanted to spend my energy on, I could absolutely make that work.”
Talk to your doctor. You may need to change your lifestyle with EoE, but your social life should not suffer. “The best thing you can do is talk to your doctor if you have symptoms that are really affecting your life. Discuss what options are available so you can move forward and thrive.