4 Side Effects of Gastroparesis Your Doctor Doesn't Tell You About

When you are first diagnosed with a chronic physical illness, there are often an accompanying list of symptoms and side effects (from medication, or from the disease itself) that you come to expect.

As someone with gastroparesis, a typical day for me includes fatigue, nausea, vomiting, intense abdominal pain, and bloating. Long-term effects for me include weight loss and malnutrition. Those are all parts of my disease that I anticipated always experiencing after I was diagnosed, and had been experiencing for many months prior to diagnosis and treatment. However, there are several “side effects” my gastroparesis has had on life that I did not expect.

1. You may lose friends.

If my first GI doctor had told me “You have severe idiopathic gastroparesis, and by the way people will start dropping out of your life,” I would not have believed him. Even reading about people’s experiences with chronic illness on the internet did not prepare me for the reality of watching friends slip away.

When you’re constantly unwell, it’s understandably difficult to maintain a social life or be as involved in activities, the school community, or any area of your life as you would like to be. I had to cut back on my extra-curricular involvement at school, and also had to start saying “no” to my friends a lot more than I could say “yes.”

Whether I had to cancel plans last minute because I was in the emergency room, or simply didn’t see the point in going out to a bar when I can’t drink, the list of things my friends asked me to do grew smaller.

My list of friends grew smaller.

I still have great friends, and I love the ones that I have, but there have definitely been moments when someone’s lack of empathy or understanding for my situation has caught me off guard. I’ve had people I thought I was close to tell me I was taking advantage of being sick to get out of hanging out; a former friend told me I was being selfish for having a doctor’s appointment scheduled on her birthday.

2. Your life may not look the way you dreamed it would.

When I was a kid, dreaming about my future, I would fantasize about being a published author or going to medical school and becoming a pediatric oncologist. I would imagine all of the places I would travel; in high school, my best friend and I would talk about moving to London together after university.

None of those things have come true, and while any of them still might, it’s hard to focus on achieving my career goals or moving to another country when I seem to spend so much time worrying about doctor’s appointments, or whether I’m getting enough nutrients on a daily basis.I definitely did not dream about doing university classes online from my parents’ house with a feeding tube, talking to my friends via Skype or text instead of actually being on campus with them.

3. It may be awkward to share your story with people.

The first time I shared my diagnosis, “gastroparesis” with one of my friends, the world felt slippery in my mouth, and I found myself validating what I was saying before my friend even had a chance to react or pose a question. I was justifying my symptoms, and anticipating arguments or questions before they could even unfold.

I was nervous. I was scared.

It was weird for me to tell my older brother. Every time I have to email one of my professors, or talk to a TA after class and explain I’ll be missing the next seminar for a medical appointment, I feel hesitant.

Part of that is because I really don’t know how someone will react when I share my diagnosis with them. The hope is that they will be understanding, perhaps even supportive, but the reality is that they might be skeptical or judgmental or rude. They might ask why I’m telling them; they may say that they don’t care. They may ask an intrusive question or break out the dreaded, “Have you tried…?”

Aside from the worry that they will react negatively to my diagnosis, my health is personal. It is something that I struggle with daily, in private, on my own. It may not define me, but my disease does dictate the majority of my actions, and sharing my diagnosis and story with someone, to ask for acceptance or help, can often feel like I am giving up the independence I have carved for myself in my life as someone with a chronic illness.

The fact that they may react in a way that upsets me just makes it all the more scary to explain my condition to people, and that is not something I was told would happen.

4. Your disease will influence your behavior.

As I said before, my disease may not define who I am as a person, but it does dictate my actions. It places certain limitations on me; as someone with a gastric motility disease like gastroparesis, there is a long list of foods I cannot eat. There is a long list of medications I have to take each day. There are exercises for physical therapy that I have to incorporate into my daily routine; there are regular medical appointments that I have to plan school and a social life around.

While my doctors gave me guidelines for what to eat and referred me to a dietician, my gastroenterologist wasn’t able to tell me how it would feel to go to a restaurant with friends and not be able to partake in a meal with them for the first time. The dietician couldn’t tell me how I would start to avoid sitting with my family at meals, not because I wanted to avoid them but because I didn’t like the reminder that they could eat while I could not.

I assumed that I would continue with my life post-diagnosis as I had before, but that is not the case. I structure my day around taking medication and consuming my meal replacement beverages; I avoid going to social events if food is the main agenda.

Aside from changing what I do with my friends, my disease has also robbed me of some degree of spontaneity. I have an obligation to myself to stick with my routine of taking medication; doing physical therapy; going to follow-up appointments. Those things are now a part of my life that I cannot ignore.

Although being diagnosed with a chronic illness has definitely changed my life in ways I did not expect, and some ways I was able to anticipate, it will be OK.

Learning to live with a chronic illness is not only about listening to your body and your doctors, but being able to relax. Your disease may impact every part of your life, and while that’s not something you would wish for or expect, it is something that you can adapt to.

An important part of living with a chronic condition is accepting that your life may not be what is was before, or what you wanted it to be, but it is still your life to enjoy.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images