10 Things Living With Gastroparesis Has Taught Me


10 years ago, I was a “normal” 12-year-old girl entering the seventh grade. I was ecstatic about joining the modified field hockey team, having homeroom and classes with some of my closest friends and was excited about middle school dances (let’s be real, those were the bomb.com back in 2007). Suddenly, all of that came to a stop when I couldn’t keep food down, was in extreme stomach pain and couldn’t even keep liquids down. Soon after, what we thought was a stomach virus turned into much more. It turned out I have a condition called gastroparesis which causes paralysis in the stomach muscles.

 

Over the years (10, to be exact), I have learned a lot about living with gastroparesis. Having a chronic illness has not only taught me a lot about myself, but also about other people around me. It’s changed my life for the good and for the bad. But here are 10 things I have learned over the last 10 years.

1. Who my real friends are. 

One lesson I learned post-diagnosis of gastroparesis is you learn who your true friends are. When going through my long hospitalization, everyone pretended to be my friend out of pity because of how sick I was and they felt bad. When I “improved,” people disappeared on me. I felt as if everyone just left. However, my real friends stayed through the good times and the bad times. It’s taught me that your real friends are going to be your friends not because of what you look like on the outside, but who you are on the inside.

woman smiling and holding a painting she made

2. You mature fast. 

Living with gastroparesis – or any chronic illness – teaches you to mature faster than most people your age. You’re constantly being thrown new information, communicating with adults of all specialities and careers and learning anatomy through your experience. In my experience, I matured mentally by talking to my doctors, listening to what they said, learning how to react to different situations and also dealing with hard-to-swallow news.

3. You have a voice. 

One of the biggest things I learned is not to be afraid to speak up and ask questions if you don’t know something or are confused. You’re going through this tough time, huge vocabulary words are being thrown at you – it can be a lot to take in. Use your voice to ask questions to have your doctor clarify what the next step is or if you have a question about your care. If the doctor is explaining something to you and you are unsure, don’t be afraid to use your voice and ask for it to be explained in different words. It’s your body and you have to be the advocate for it.

4. Food plays a big role in your social life and it can be hard when you can’t eat.

Eating plays a huge role in a person’s social life. Eating is a social “event” and people are big on socializing. People gather around the table for meals and talk about what is going on in their lives, talk about the latest gossip, talk about exciting events or experiences happening at the moment. When you can’t really eat, it can be easy to lose that and feel in a way left out. Even though I can eat small portions, I don’t get hungry. However, I enjoy sitting around the table with my friends and family while they’re eating and join in on conversation. Just because you can’t eat doesn’t mean you have to limit how you socialize.

5How to find joy in small victories.

Living with gastroparesis and other chronic illnesses is exhausting physically and mentally. Sometimes just getting out of bed and putting makeup on is a small victory for me. Having the energy to go to the barn and ride horses is a victory for me. Find victory in accomplishing even the smallest task and no matter how big or small, the accomplishment feels the same.

6. It’s OK to ask for help.

You try not to let having a chronic illness slow you down, but sometimes it’s OK to stop and ask someone for help. No one is going to think any less of you if you ask for help. In fact, in my case for example, people are proud of me when I ask for help because it humanizes me. No person, healthy or not, can do everything in the world and that’s completely OK. When you’re having a hard day, it’s OK to ask for help to make your day just a little less challenging or even exhausting.

7. Having a strong support system gets you through everything. 

Another important lesson I learned after being diagnosed with gastroparesis is the importance of having a strong support system. Your support system is going to keep you going on the days you feel like giving up. They’re going to push you, encourage you, be there to hold your hand or give you a hug and help get through any news you receive. They’re going to love you unconditionally.

8. Rock your feeding tube. 

Getting my feeding tube placed was not easy for me to accept. I was embarrassed to go to the beach if I wore a bikini, I was embarrassed and afraid of what people would think of me, embarrassed if my tube showed just a tiny bit. You can feel people’s eyes looking at your stomach and not your eyes. But over the years, especially at 22, I learned to embrace the tube. If you want to wear a bikini or a crop top, go for it. Don’t worry about what others think. There’s no reason to be ashamed of what is keeping you alive. So wear what you want, show off your tube. Accept the tube and never feel ashamed.

woman posing in a crop top with a feeding tube attached to her stomach

9. Find something you love to do. 

Finding a hobby is something I learned can really change how you feel. Having gastroparesis and never feeling well can be exhausting. Finding a hobby keeps your mind active and increases the dopamine in your brain, making you want to do things. For me, painting and riding horses are my release. Having gastroparesis can be stressful and finding a way to release that stress will keep your brain in a good spot and keep you productive.

10. The sky is the limit.

The 10th thing living with gastroparesis has taught me is that the sky is the limit. You can do anything you set your mind to and no one can limit that. You might have to modify a few things, but never let someone tell you that you can’t do something simply because of an illness. If you want something, go after it. Don’t let having an illness slow you down or stop you from accomplishing what you want.

Although these are 10 things living with gastroparesis has taught me, I’m still learning new things every day and accepting who I am is one of them. Over the years, I’ve learned that while getting diagnosed with this kind of stinks, it’s helped me become the person I am and that’s nothing to be ashamed of.

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