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I was not always a perfectionist. As a child I used to be quite carefree and health was never an issue at all. Aside from occasionally contracting influenza during winter times, my health was excellent. Life was fun, as I had practically everything I wanted.

As a teen I continued to live that life. I became a thorn in the side for teachers, as I was not the quiet and well-behaving student at all. At one point I thought to myself, “This can’t go on any further, it’s time to change my ways.” I was around the age of 15. I managed to better myself and worked harder for better results in school. I gained back the trust of my parents and my teachers and I was quite proud of myself for doing so.

Around this time, my health began to act up all of a sudden. I suffered from constant nausea, a loss of appetite, stomach pain and gastroesophageal reflux. This came out of no where and I was desperate to get rid of it or at least find out what caused it. Unfortunately doctors did not believe a word I said and everyone around me thought I went back to my old ways, being lazy and all about taking the easy way out of things.

It saddened and angered me and it also made me into quite the bitter person that I can still be from time to time. Everyone strives to be accepted and to be taken seriously by others to some extent. I knew that I could not expect people of my age to understand, as many of them are as uneducated on chronic health issues as I was myself as well when I was still healthy. But the fact that doctors were not keen to help me frustrated me to no end. It eventually took them more than two years to find out that I suffered from gastroparesis and esophageal achalasia. In those two years my life changed drastically, especially during the time I got involved with psychiatry. Those were not times that I look back on with a smile, to say the least. During that time I learned that I had some things that kept me sort of happy and kept me going: my ability to learn new things, educating others about chronic illness, writing, and something that is a bit more trivial – my looks.

I was never a perfectionist when it came down to my looks. I liked to look good like many other women do, but I did not obsess over it. My looks and the worth I attached to them became both a blessing and a curse. Taking the time to look good and being complimented on it made me feel happy, but it also brought along people who thought I lied about my health issues because I “did not look sick.”

What does a sick person look like exactly, by the way? Pale, skinny? That makes no sense, as some medication can trigger (massive) weight gain. I started to lose weight, but only after a year or so after I started having my symptoms. I am naturally quite pale, but get a lot paler when my health acts up. I also get dark circles under my eyes. You would instantly notice this when I do not wear makeup, but here’s the thing: I do not go out without wearing makeup. And even if I do, I would wear big sunglasses.

I would not post photos to my social media without makeup or without looking good, out of that perfectionism. Not being very healthy is saddening enough, I want to at least look like I am healthy. But the “side effect” of taking all the time and money to look healthy and beautiful is that people will see and treat you like a perfectly healthy person. Which I am not. As much as it hurts me, I have to face that fact.

A professional photo of the writer standing in a white room.

People have accused me of lying about my health. They told me there is no way that I can feel nauseous every day but still manage to put on makeup, wear heels and smile all through the day. They will tell me to eat more in public, even though that is something that I dislike doing and everyone who knows me knows this. People want to take me to restaurants. Restaurants are the places that I used to love going to, but now being there forces me to confront myself with the truth. I am not like other, healthy people.

I enjoy being with people and seeing them enjoy foods. There was a time, years ago, when I was not like that. I am going to be honest, I was very envious and it even angered me to see others enjoy foods that I used to enjoy as well. I am not like that anymore, but I still don’t like eating foods in public. Usually I want to take a rest after eating, so that it does not feel like a rock hit my stomach. I also don’t eat big portions of food, I’d rather have small portions of food all through the day.

So trying to look as good as possible has benefits and down sides. The benefits of it are that people treat you like a “normal” person (in the sense of being healthy) and it also helps me to feel better as well. This might sound strange, but when I look sick I feel worse. I do not know why.

When my symptoms first started I felt a lot worse than I do now, and I am so thankful for being the way I am now. I now know how to deal with my symptoms and I know my limits and the things that I am able to do. It was not like this in the beginning of my illness. I was very lost, anxious, distraught and I had no idea how to cope. My perfectionism became a way of coping with my illness. It became a part of who I am and a part of my coping mechanism. And like many coping mechanisms, it has its benefits and downsides.

Follow this journey on Pascalle Johanna.

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As 23-year-old dance teacher Raven Walton competes on CBS’ “Big Brother” this summer, she’ll be fighting for more than the $500,000 prize. She’s also raising awareness of her chronic illnessgastroparesis, and the gastric pacemaker she uses to treat her condition.

The Arkansas native was diagnosed with gastroparesis at 16. In a pre-show interview for CBS, Walton said it’s possible to actually see her pacemaker in her stomach. She’s asking “Big Brother” viewers to use the hashtag #PacerPower when discussing her on the show on social media.

“Pacer power, ya’ll!” Walton said. “It gave me a second chance at life. And it’s my second heart.”

Gastroparesis is a chronic digestive condition that literally means “paralyzed stomach.” The stomach does not contract normally, preventing digestion of food and leading to symptoms like nausea, vomiting and malnutrition. Though the condition currently has no cure, treatment options include diet changes, medication and in some cases a feeding tube.

The gastric pacemaker, or gastric neurostimulator, is a relatively new treatment in which a small battery-powered device is implanted under the skin and connected to electrodes placed on the stomach. Electrical impulses stimulate the stomach. Again, gastric pacemakers are not a cure and are not effective for everyone with gastroparesis, but some patients find one can help improve their symptoms. Walton’s battle to afford a gastric pacemaker was featured on CNN when she was 15.

Like most people with gastroparesis, Walton wants to raise awareness; in a feature about Walton that aired on KTHV 11 last year, she said she’s hoping gastroparesis can some day have an “ice bucket” moment (referring to the once popular Ice Bucket Challenge). How she’s feeling fluctuates every day, and she knows she may not always be able to do things like dance, so she’s trying to fit in as many experiences while she still can.

“I know one day eventually I won’t be able to do all these things. I know my disease is going to progress to where I can’t. So that’s why I’m doing it now,” Walton said.

Walton’s illness will also influence how she spends the money if she wins — she told The Hollywood Reporter  she isn’t able to have children because of the pacemaker and “different circumstances,” so the first thing she’d do is freeze her eggs.

“[The show] is bigger than me. It’s my future. I’ve been through a lot with my disease and it’s taken a lot away from me growing up,” Walton said. “This is my chance to take some of that back.”

“Big Brother” airs Sundays and Wednesdays at 8/7c and Thursdays at 9/8c on CBS.


Many people seem to struggle with some sort of insecurity when it comes to weight…but with gastroparesis it’s a unique type of insecurity. You worry about getting too skinny because if you do, people think you’re sick again. You worry about losing weight from your illness and people saying, “You look good.” You worry about gaining weight and people mentioning you should slow down on your eating.

Size always seems to matter with this condition and it can fluctuate. From gaining weight to losing weight and repeat, over and over again. Your clothes never fit you just right as they did before you got sick. Some people who’ve had it their entire lives never have clothes that fit properly. Weight seems so superficial, but having the “perfect clothes” and the “perfect body” has become an ideal.

 

Gastroparesis can hurt your self-image. You try your best to ignore it, but the insecurity always lingers. You wonder if you should eat more or eat less, even if it hurts your body, just please others. To everyone struggling with this, I know how it feels and it’s unfortunate.

Try your best to not listen to the comments about your weight. Block out the negativity even when it seems impossible. Tell people to stop talking about your weight. Try not to be someone else with a different body. Just be you and try to be as healthy as possible. And even when you don’t feel like “you,” you’re still beautiful. Don’t let anyone take that away from you.

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My one year anniversary of getting diagnosed with gastroparesis happened on May 12th. One year of knowing what was plaguing my body. Leading up to this day I was worried I would be a total wreck emotionally. Three days earlier on May 9th, I had a huge exam that had been causing stress for me and my classmates for a while. Having May 12th looming over my head didn’t help in the slightest. It really started to get to me. Thinking about how much worse off I was, how I may keep getting worse, and not knowing the future. The GP diagnosis blindsided me completely in 2016 and was a lot to think about. Especially as so many fears had poured into my head that night after the diagnosis. In the midst of all of this near the anniversary, I got this text from my friend:

“I think you have had a lot of wins, and it is best to focus on those instead of the troubling things that have come up.”

 

It is beyond simple to let the wins slip through the cracks when day in and day out you are stressed, nauseous, in pain and tired. I can get stuck in the monotony and negatives of dealing with this. When you are in the trenches of living with a chronic illness, you can live day to day waiting for things to ease up a little. It is easy to focus on how things might get worse or worry about what your condition will be like in a few years and how that could ruin your life. I know I get stuck in that occasionally, especially with flare-ups. But you have to look back and find your victories, notice your conquered mountains, look to all the moments of sunlight and joy and just simply celebrate the wins.

For me one of the big “wins” was having survived my first year of PT school when it seemed like body was working against me and trying to derail the plan. I have many amazing things set up for the next year. I graduated college a few weeks ago. And even beyond the big things, I had tiny wins that were worth celebrating too. Like enjoying a night out with friends even though I couldn’t eat.

Find the little things, find the big things, write them down and keep a list. On days where it gets hard or scary, look at that list and remind yourself of the amount of times you have won. Remind yourself that deep inside is a superhero fighting and winning on a daily basis. Chronic illness can’t stop you from finding those wins. They are much more joyful and a better focus than the negatives of dealing with a malfunctioning body.

Choose your favorite win and the next time you don’t think you can do it, remind yourself you can. You’ve done it before and will do it again. Plans change and life causes things to turn upside down, but that will never change how much you have already done and will continue to do. Remember, focus on your wins and celebrate them!

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Nausea, vomiting, dry heaves, pain, exhaustion and malnutrition are just some of the many symptoms I deal with having gastroparesis.

Gastroparesis is paralysis of the stomach muscles, so when I eat, the food just sits in my stomach way longer than it would for the average person. It will sit in my stomach and rot, make me nauseous and make me very bloated. A lot of the time it sits in there so long my body will eventually reject it and I throw up. Eating with gastroparesis is like Russian roulette – you never know if you’re going to go into a flare and get really sick or be OK.

 

My body is trying to starve me, eating becomes scary, I feel hungry but I am too nauseous to eat. My bed becomes my prison because I feel so awful that I can’t leave it. Imagine having a really bad stomach flu that just never went away – that’s my life. I start to miss food, but I associate food with being sick. It’s no way to live. It gets extremely lonely, being sick constantly and always in bed. I don’t get out much or interact with a lot of people, minus doctors and nurses. It’s emotionally and psychically exhausting.

There is no cure for gastroparesis and very few treatment options. I’ve tried many different medications, different surgeries and right now I’m using a jejunostomy tube for feeding. A jejunostomy tube is a feeding tube that is placed in your abdomen and goes into your small intestine, so it bypasses the stomach, which is the problem area. My surgery options right now are a pyloroplasty, which is where they cut out part of your stomach to widen the pylorus so your food can empty into your duodenum. The other is a gastric pacemaker which is an electrical device that goes under the skin and has wires that connect to your stomach and send electrical pulses to move your stomach muscles, in the hopes of reducing nausea and vomiting. Both surgeries are invasive and not guaranteed to be helpful.

The truth is awareness and research for gastroparesis is minimal. We should have more options. We are struggling, we are fighting, we shouldn’t be invisible but we tend to be. I even occasionally have to explain to the doctor what this disease is.

collage of photos of a woman in the hospital with gastroparesis

Gastroparesis is awful, and it’s a giant question mark in my life. Especially when it is diagnosed as idiopathic, which means doctors don’t know what caused it. I don’t know why I was fine for the majority of my life then out of nowhere my stomach muscles just stopped working. We need to raise awareness and hopefully more research will be funded to help lift the giant weight off gastroparesis warriors.

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It’s easy to take for granted the things we expect to always be there. It’s easy to take for granted the basic daily functions the human race was created to enjoy, such as vision, hearing or the ability to walk, to exercise or to eat and drink. It’s ingrained in us and when we are born with it, over time it becomes hard to imagine there would come a day we would have to part with something of this magnitude. Or so I have learned.

At 17 I started to get nausea, after having already struggled with abdominal pain for years prior. It was my normal, even though it’s not normal. At 19 my health status gave way to an innumerable amount of
illnesses. Somehow something damaged my vagus nerve and gastric muscles. Gastroparesis is my diagnosis.

My condition is progressive.

 

I’m losing the ability to eat or drink anything. Food is so not enjoyable for me and while I still have a handful of foods I can handle – for the most part – liquids are worse.

I never in a million years would have imagined this would come. How could anyone imagine this?

But, that is not all. My body is struggling in so many ways. What once came easy for me now has me facing an uphill battle. What I wish others would understand is how lucky they are. Even if it doesn’t feel like it, being alive is a blessing. Being able to meet these basic daily functions is incredible. It’s a miracle in and of itself. Miracles don’t have to be something big like being cured from an incurable illness. For me, I realized miracles are the million little things we don’t think about. The hundreds of functions our bodies perform for survival, because even if my body is struggling, I was still created for something amazing. We all were.

When we are faced with challenges so big, such as the loss of basic functions in the body, it’s confusing. However, confusing as it is, I
now know we were always created to be victorious. We have strength within us that comes out of nowhere during the times we need it the most. While society revolves around food. Delicious new meals and
desserts. TV shows on cooking. Books of recipes with enticing photos. Holidays, birthdays, pretty much every social gathering you can think of. Dates, wedding receptions. You name it, you will most likely find food. Some kind of refreshments. That’s OK. The nutrition found in foods and the hydration from liquids are what sustains us.

I should know. As one who has struggled with malnourishment and severe dehydration I know the devastating toll it can take on the body. But, I also know the victory of making it to even just 500 calories in a day, or 1,000 calories a day. I know the victory and excitement of even just eating a few bites of food, or sipping a few ounces of liquids. It’s easy to take for granted the things our body was created to do, but that’s not me. I’m grateful for life.

What I wish to ask of everyone who has read this is to just try and remember how blessed you are to be able to enjoy a healthy lifestyle of eating healthy and exercising, because it’s a luxury some don’t have. If this is a luxury you are not blessed to have, remember, you were blessed with courage and the ability to come out victorious. Your life still has a purpose, and in courage you will find who you were created to be.

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Thinkstock photo via Olarty.

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