illustration of a frustrated young girl

I have had a recent setback with gastroparesis and am back to puking again everyday. So, I’ve decided to write a story of things loved ones, doctors and friends say to me that I cannot stand.  

1. “Are you anxious? Is that why you puke?”

woman sitting with legs crossed in front of the toilet
Samantha in front of the toilet

No, it is not why I puke. I puke because I have a disease that makes me puke. I know for a fact I’m not anxious 24/7 and vomiting because of this. Yes, I have an anxiety disorder, but no, my gastroparesis and anxiety are not related. A doctor actually once told me this was the reasoning behind my puking and I was livid.

2. “Are you bulimic? Are you sure?”

This is the most inappropriate question on this earth to ask someone with gastroparesis and sadly, it was asked by a doctor. Bulimia is an eating disorder — not one to be taken lightly, either. But it is not related to gastroparesis. Gastroparesis is when you have a stomach that doesn’t function. I throw up after every meal but my digestive system makes me do it. People should never assume the reasoning behind what my body does; I can’t control it. It’s the honest truth!

3. “Well, it makes sense you’re vomiting because you ate unhealthy food.”

No, it doesn’t make sense! I assure you: whether I eat a carrot, a smoothie, a piece of candy, or sometimes even just water, I will throw it up! I can’t change it, I can’t control it — it just happens.

4. “You’re on medication… shouldn’t you be better by now?”

No, I am not better by now. My medication worked for a while but it makes me super tired and is no longer working. I am back where to where I started.

5. “Why do you need to wait a certain amount of time before you eat?”

I need to wait a certain amount of time because if I don’t wait at least 30 minutes, my medication, Reglan, doesn’t process in time. I will get sick after I eat — even sicker than Reglan makes me. Is it annoying when my friends can just go eat whenever and I have to strategically plan when I eat? Or when my boyfriend surprises me with a sweet treat and I have to wait to eat it and come off unintentionally ungrateful? Or when my parents say dinner will be ready soon and I have to ask how soon so I take my Reglan in time and they can’t give me a time? Yes, it’s very annoying — but I have no choice.

If you know anyone who has this disease, please keep in mind we are not in control of our bodies; our bodies control us. Whether we’re perfectly fine one day or leaning over the toilet for hours on end the next, it’s not our fault! Please stop trying to make us think it is.

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This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the gastroparesis community. Far from being a festive season, this can be one of the most challenging times of the year for us. The physical and social aspects of dealing with this disease make many wish we could hide from the holidays rather than join in on the celebration. And though we are glad our families and friends can savor the wonderful treats associated with this holiday, we long for a gala where food remains backstage and sharing each other’s company becomes the star of the event.

Thanksgiving is particularly difficult as it is a holiday that largely centers around the feast itself. Many in our community cannot eat at all and most are very limited in what they can consume. Can you imagine observing all the food that appears on television, on billboards, in social media feeds and in various public arenas at Thanksgiving time and not being able to consume even a few bites of it? Can you envision watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it? It is painful – physically and emotionally. We long to join your events, but the temptation to eat that which we cannot is sometimes overpowering. At times, even the smells of the foods at such events keep us away. Since nausea is a major concern, the aromas filling your houses are often intolerable. And we may worry we will not have unfettered access to your restrooms should they be required. Not a pleasant topic perhaps, but these are the joys of the physical symptoms.

Many of us are unable to participate in holiday events and family get-togethers due to the ever-present physical symptoms of the illness and the sheer fatigue that accompanies it. We are sometimes, quite simply, too sick and tired to make it to the party. Because we may be worn down from battling pain and nausea, and because many of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event. We cannot afford to waste precious energy needed for our survival on these lovely but unessential “extras.”

This brutal disease can take a toll, emotionally and mentally, at this time of year. We long to be included, but we may not know how to make you see we cannot celebrate in the same fashion as most of you. Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine or with the help of another such creative diversion; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend.

Please try to understand that when we pass up invitations or do not “like” your posts regarding foods and holiday parties, we are not trying to be unkind, and we do not wish to avoid you. We only want to escape the things that make dealing with our condition more difficult. Believe it or not, we do not like to see our family and friends uncomfortable. We are well aware that we can be an inconvenience and a source of guilt for those who cannot help us and who feel bad for partaking in the dinner while we watch from afar. We do not wish to see our loved ones enjoy the festivities any less because of our presence.

'Your illness is not your fault, and you cannot make it disappear simply by wishing it away. You have no reason to feel guilty. You are surviving today, despite your challenges, and that makes you incredibly strong and amazing.'

What many of us would like, and what you can offer is, first and foremost, sensitivity to our plight. I miss my old life and long for things to be the way they were prior to my diagnosis. I struggle greatly to accept my life will never return to the “way things used to be,” and I sometimes get lost in those sad moments. Many of us are capable of happiness at this time of year, but we might forget this for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives. We fight to find substitute sources of delight and focus on what truly matters.

In addition, you can help by offering alternatives and minor accommodations. Perhaps friends and families might be willing to oblige by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste your culinary creations. Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so we miss the dinner portion of the event and do not exhaust our limited energy resources. We do not wish to insult you, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event. I am sure you would not wish this for us. And if you are feeling especially sensitive and accommodating, perhaps you might consider holding a completely separate holiday affair which does not include food in any form — a second event just for us. Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes. I know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

'Gastroparesis: I have learned to pause and behold, Take a breath, delight in each second, And I endeavor to love and accept, Welcome every chance that I am given. #CureGP' I do not expect (nor want) you to give up the traditions and events you have always enjoyed at this time of year. I ask only that you understand we sometimes mourn days past and long to have those times back again. I hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it isn’t really about the food. Isn’t it truly family, friends and good times spent enjoying each other’s company that make the holidays special?

Happy Holidays!

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When I was diagnosed with gastroparesis two years ago, I had no idea where that diagnosis would take me. Among all of the symptoms, the most difficult aspect for me to deal with has always been the dreaded feeling of not knowing. Not knowing why this happened to my body, not knowing what medications to take, not knowing if the meal I eat will leave me sick for days to come…

Many of the people diagnosed with gastroparesis do not know why this condition sprung up in their lives. Imagine waking up one day and feeling like you have a stomach virus… then imagine that feeling never going away. The basics of gastroparesis include persistent nausea, vomiting, chronic stomach pain, uncontrolled weight loss, indigestion, fatigue, malnutrition, and loss of appetite among others.

When I first delved into treatment, I was up for whatever would “fix” me. But I soon realized a “fix” wasn’t what I truly needed to be looking for. With no known cure, there is no one-size-fits-all treatment. I tried multiple medications, multiple doctors, different procedures. Nothing improved my quality of life and each time something didn’t work, I would lose a little bit of faith that anything would be able to make a difference. Not knowing how to help myself was one of the worst feelings I have ever experienced.

By the summer of 2015, I was unable to eat and down 30 pounds, living off TPN infusions 12 hours a day. That’s when my doctor suggested the implantation of a gastric neurostimulator (or as some know it, a gastric pacemaker). Like everything else, this was not a guaranteed fix. It works for some and not for others. The risk this time was higher than any other treatment or procedure I’d had… a major surgery, cutting open my abdomen and implanting a foreign device inside. In addition, the FDA has only approved the neurostimulator as a humanitarian device used in the treatment of gastroparesis… meaning, there is not yet enough evidence to prove it is an effective treatment, since it is still a fairly new option for patients with this condition.

For me, it was a no-brainer. I would take the risk. I went into my surgery more hopeful than I had allowed myself to be in a long time. The neurostimulator did its job. By blocking nerve signals from my stomach to my brain, it helped curbed my overwhelming nausea. I was able to eat food again without feeling sick immediately. I wasn’t back to normal, I still needed to carefully choose the foods I ate and the amounts, but to be able to have a choice was huge for me.

Unfortunately, a few months ago I began having shocking pains within minutes after eating… near where the neurostimulator was implanted. With all other problems ruled out and months of medications trying to curb the pain, the neurostimulator was shut off. Within minutes, my pain drastically decreased.

There was no black and white answer to my pain. Doctors told me sometimes this happens to patients. I was so discouraged. With the stimulator turned off, my original symptoms came flooding back within days. I wasn’t ready to give up on the device that has helped me so much and be left to find a completely different treatment.

My surgeon had seen these symptoms in other patients with the stimulation system and he said he had replaced a number of devices that were causing patient’s pain, pain that had no clear cause. Those patients found relief and success with their new neurostimulators. The catch: He couldn’t guarantee I would see the same results.

I found myself back at square one but, this time I wasn’t so quick to jump back on the operating table. I had put myself through major surgery a year before, but what if I did it again and got no reward? For many who have with chronic illnesses, they face the same dilemma. Whether it’s surgery, new treatments, new medications… many times there is no “right” choice to make in the moment. Patients must make the choice that they feel is right for them… not what has worked for someone else. The weight of these decisions is incredibly overwhelming.

But, I have found that I must allow my faith to be stronger than my fear. In a week, I’ll undergo surgery again to receive a new stimulation system. I know that this decision isn’t for everyone, but I strongly believe it’s the right decision for me. One of the most important things I have learned over the last two years is this… No one knows your body better than you know yourself. You are the best advocate for your health. Never let someone dismiss your opinions, because your opinion should always be the most important.

There are very few things about life that don’t change when you become ill with a (or several) severe chronic illness. People ask all the time about how I must be missing college,
competitive swimming, and food (I am tube-fed due to gastroparesis), and of course I miss all of those things every day! However, when you are really, really sick for such a long time and your daily life is affected so greatly by an illness, you learn to miss not only the big things (like your college education or your job, etc.), but some of the smaller things that “normal people” — aka healthy people — may not think about the same way.

So, here are a few of the things about life pre-chronic illness that I miss…

1. The gift of spontaneity

girl in hospital bed holding koala stuffed animal

Oh how I miss being spontaneous. I would love to go out with friends for a last minute movie or party at 10 p.m.; oh but wait. What about my tube feeds? And did I already take my nighttime meds? Because I can’t drive if I did. I shouldn’t drive at night anyways if I’m going to be tired. Plus, how will I feel tomorrow if I go out so “late” tonight? And yes, 10 p.m. is late for me. I know, I’m 20 years old and 10 p.m. is late. Don’t judge what you can’t understand! My body has a mind of its own.

You know what else I would love to “spontaneously” do? Eat a midnight bowl of cereal. Because yes, one of the foods I miss most is cereal. And I used to eat it at any time of the day. Honey Bunches of Oats with frozen blueberries. But I can’t have Honey Bunches of Oats or frozen blueberries so that’s a no-go! Plus, if I were to spontaneously eat anything,
I’d pay for it. Big time!

There aren’t a whole lot of spontaneous adventures when you have to plan for medical needs. I still like to try to find them sometimes, and my family is helpful in that, but it’s not the same as when you’re healthy. Having an extremely limited energy supply and requiring medications and infusions multiple times a day is very limiting!

2. Structure

OK, I know I just said I miss spontaneity, but I also miss routine. I miss going to school. I miss working. I miss having a social life. I think what a lot of people don’t understand about those of us who can’t work/attend school full time is that we would give anything to do just that! Netflix, crafting and sleeping gets really boring really fast! I know many people would love to have a day or a week to just lay in bed binge watching their favorite shows and eating junk food, but that isn’t what it’s like when you’re sick. It’s a chore to stay in bed all of the time. And we aren’t comfortable while doing it! A lot of us don’t even get to eat!

Even when we can come up with simple routines and other productive things to do from home, it’s not the same as leading the lives we had planned out for ourselves pre-illness.

3. Exercise

girl standing on mountain at sunset
My family and I love to go up on the mountain to see the sunset. This is about as adventurous as I get during my tough times!

The pool. The gym. Running. What I wouldn’t give to be able to workout like I used to. Exercise always made me feel so much better both physically and emotionally/mentally. Now I’m lucky to get in a walk or a 15-minute floor exercise! Some days, I hardly leave bed. Working out is something I definitely miss a lot when I’m too sick to get up and move. I know a lot of people see it as a chore when it’s a part of an everyday routine, but it is such a gift to be able to take care of your body and self like that! Even when I can do some floor exercises or yoga, I can feel the difference.

4. Showering

With postural orthostatic tachycardia syndrome (POTS), showering is a chore. I can only stand up in the heat for a short period of time before I pass out or throw up, so I have to get everything done quickly and efficiently. I also have to put a cover over my central line on my chest so that it doesn’t get wet or infected. By the time I get out, I’m exhausted and often barely have the energy to get dressed and brush my hair. Often times my mom helps me do my hair so I can crawl into bed and sleep it off.

I miss long, hot showers that felt refreshing and cleansing. I miss showering whenever I wanted to without thinking if I had time for a nap!

5. An active social life

three girls forming a pyramid on hands and knees
A photo from my first (and only) year at college! Such fun times.

Your social life usually changes drastically when you become chronically ill. For me, it pretty much took mine away. So yes, I miss having a social life! I miss going out and hanging out with people my age. I miss meeting new people. I miss wearing cute clothes all the time and actually feeling my age. But, I’m thankful for the people that do come around and see me and I’m thankful for all that my family does to entertain me at home.

It’s pretty common to lose a good deal of friends when you become chronically ill. These relationships can be straining for both sides. After a certain point in your illness, friends just stop asking you to come out with them; either you can’t eat, you’re too tired, or you have an appointment and they have heard “no” a few too many times. Then eventually they stop texting at all. And it’s hard for us (the spoonies) to keep up with reaching out to others, too. You really find out who your true friends and supporters are.

For me, my family has been there for me through it all. I wouldn’t be here without them. Sadly, that is not the case for everyone, but we all find out who our “people” are.

6. My wardrobe

Let me tell you something about (severe) gastroparesis and small bowel bacterial overgrowth (SIBO). You can’t wear real pants. Ever. First, there’s the constant weight fluctuation. One day you’re a size 3, the next you’re a 00. OK, so maybe that jump would be from one jean season to the next, but it still sucks having to buy new pants every season. I own pretty much every size from a 7 to 00. My little sister loves when I go through my closet each year.

Secondly, there’s the bloat. And the bloat never cooperates. I mean girls, you know what it’s like to be bloated during your time of the month, but try being bloated any time of the month. Any time you take a sip of water, any time you eat, any time your gut decides not to go to the bathroom for a few days/weeks. (Sorry, TMI?) I hate the bloat. It messes with my clothes, it hurts, and it is just unpleasant in general!

I’m currently a size 00, but I can’t ever leave the house in jeans because my stomach bloats so badly that it looks like a balloon is blown up in there. And when that happens, if I’m wearing any type of pant that has a constricting waistline, my nausea and pain will skyrocket. This also means I will usually be found in an oversized or loose shirt of some kind because I don’t like to wear shirts that hug my bloated stomach or my feeding tube.

Let’s just say, I miss when clothes were fun!

7. Feeling in control of my body

This is probably the biggest thing for me, and it kind of wraps it all up. It’s not easy being fed through a tube at night and relying on IV hydration. It’s not easy not being able to exercise and eat healthy the way I want to. My body changes and adjusts to these illnesses in whatever way in needs to without me being able to do anything about it. I take a huge amount of medication and supplements to try to help symptoms, keep vitamin levels right, try to help my hair from falling out, etc. I have side effects and interactions that I can only deal with as they come along. I have doctors and nutritionists telling me how many calories I should be getting in and how much weight I need to gain.

Every week I have doctors appointments and nursing visits where everyone asks me personal questions that most 20-year-olds don’t have to talk about with other people. I have very little privacy and very little control over things that should be mine to dictate. It’s not something you think about until it’s something you face up front. Honestly, I’m pretty used to it now. It’s not a big deal to have people asking me questions about my weight, my bathroom habits, or my sex life anymore. It’s just part of my new normal. Although it isn’t what I would have chosen, I’ve learned to accept and be content with my life for what it is today.

Chronic illnesses have taken a lot from me, but if they’ve taught me anything, it’s that you have to be grateful for everything you have in the now, and look forward to and be hopeful for a better tomorrow.

I’ll be the first to say it: I’m a big girl. I have gained a lot of weight over the last eight years due to various illnesses, psychotropic medication, etc. I don’t deny it. I have never been in denial about how large I am. I know how it negatively affects my health. I have been working to lose weight. And guess what, I’ve lost 30 pounds.

But here’s the catch: I was diagnosed with gastroparesis in June and have been on a liquid diet since then. I have lost 30 pounds in three months, which is pretty substantial weight loss. But my doctors applaud me for it. They are excited that I am losing weight. They seem to forget that I’m losing weight because I physically cannot tolerate food. That the only reason I’m losing weight is because I’ve been on a liquid diet for three months and everything else I throw up.

If I didn’t start out as heavy as I was, this would be cause for alarm in an average sized person. If someone weighed 140 pounds and they lost 30 pounds in three months, doctors would probably freak out. But me? I get a pat on the back.

We all know that “fat shaming” exists in society, but I don’t hear a lot of discussion on how the medical community silently shames the chronically ill.

I’m not talking about when you go in for your annual physical and your doctor tells you that if you can lose 10 to 20 pounds your blood pressure will be much better. I’m talking about those of us who are excited when our appointments go from every week to two weeks to — get ready for it — even a month between appointments! Doctors rarely comment on my weight. They know I know the medical impact of being obese; they know I have many chronic conditions. It is not something that is brought up in appointments. They have accepted me where I am.

But this, this pat on the back for losing 30 pounds, for how good it is for my joints and my back and my health, is showing me the shaming still there. I am not dieting, I am not actively trying to lose weight. Yes, it feels good to lose weight. But I didn’t decide on a whim one day to stop eating food. I didn’t decide that liquid nutrition would be how I lost my weight. I was forced into it by a severe medical condition that not only doesn’t allow me to enjoy food, it also affects my ability to absorb my many medications and a host of other side effects.

Food is such a social thing for humans. We gather, we share stories, we bond. It brings people together. We have holidays like Thanksgiving that are centered around food. So while you are applauding me for my weight loss, think about what I’m missing out on. Think about the fact that I’m missing out on all of that. Think about the fact that if I do choose to just suck it up for a night and go out to dinner and eat and socialize, I will pay for it, sometimes for a few days.

The holiday season is coming, a season I look forward to every year for the family gatherings and the stories and the food. Food that represents my culture, my traditions. Food that brings my family and friends together. Holidays are centered around eating. And I can’t eat.

I accept my diet. I don’t really get hungry too much anymore; I can sit and watch people eat now (unless it smells really really good). But it’s not easy. I’m anxious about the holidays. I can choose to eat, to be with my family, to celebrate and pay the price later or maybe even right there during the middle of Thanksgiving or Christmas. But with the price it comes with, is it worth it? I can choose to not eat and enjoy the holiday to the best of my ability, depending on how I’m feeling that day of course with everything else.

So yes, thank you for your excitement for my weight loss. I’m excited too. I haven’t seen numbers on the scale like this in years. But please, also recognize and acknowledge the fact that this is a side effect of a serious disease. It may be positive in some ways, but it is also very negative in a lot of ways you don’t think about.

Follow this journey on Living Without Limits.

Pain for me is inevitable. I feel it every day upon waking, every day upon sleeping, and sporadically throughout the day on a good day or constantly on a bad day. It’s how I know I am still alive. If I woke up without pain or nausea, I would think I was dead. This is my reality. I could scream. I could cry. I could give up. But this is the hand I believe I have been given by God and I intend to play it to the best of my ability for as long as I’m able.

But being in pain when you are trying to relax, to have fun with your family, to do something you rarely get to do, is challenging. It is trying. It is heart breaking. There are so many days I want to give up. There are many days I want to stay in bed. There are many times I want to stop fighting.

It doesn’t seem fair. It never seems fair. I hope that I will have just a few good days to do the things I want. Yet I am so sorely disappointed when reality sets in and I’m kicked off my feet for the 100th time.

Instead of sitting here staring at my computer, I could be on a boat right now, yet I had to cancel the reservations because pain and nausea is my reality today. So instead of soaking up the last days of sun I have, I’m left confined to an air mattress where the bathroom seems to be my only destination for the day.

At 26, days like today leave me feeling defeated. I feel deflated, worn out, tired. I feel as if I am constantly pushing my body and am only met with consequences instead of rewards. For most, going to the beach, the pool, shopping, or any other activity on vacation is relaxing. But for me it is taxing. It is trying. It is all too often overwhelming.

As I lay here feeling completely and utterly expended, I can’t help but remember last year when I returned from vacation. Last year when I was almost placed on feeding tubes. I can’t help but think it was my fault. If I hadn’t pushed myself too hard, if I hadn’t eaten so much, if I hadn’t tried so many new things, maybe, just maybe, I wouldn’t have been put in that situation. But here I am a year later, worrying that this will be my destination at the end of my vacation.

At one point, being put on a feeding tube seemed life-saving and life-altering to me. I thought if I never had to eat again, I would never again feel pain. I would never again feel nauseous. I thought this would be the answer to all of my problems. But after research and seeing my community go through TPN, GJ tubes, and other various tubes, I am left terrified.

I’m utterly terrified. I don’t want a synthetic tube giving me the difference between life and death. I don’t want food being rerouted around my stomach and vented out of a plastic tube. I don’t want to take my medications through a tube and sit idly by while others enjoy food around me. Eating hurts. But not as badly as not eating hurts.

Yet there is this deep-seated fear in me that when I go back to Hopkins, I will end up on feeding tubes because of the choices I have made on vacation. It may be irrational. It may be hasty. It may be unfounded. But these are the feelings whirling through my head as I lay here unable to do much more than staring at a screen.

Because reality for me isn’t tanning on a beach. Reality for me isn’t eating scrumptious meals that are digested properly. Reality for me isn’t strolling downtown shopping through the streets of a new city. Reality for me is a hospital bed. Reality for me is a synthetic tube being placed in my stomach with a needle perforating my esophagus and stomach lining. Reality for me is IVs, surgeries, procedures, tests, and doctor’s appointments.

My life certainly isn’t a vacation.

That isn’t to say that I’m not blessed. I am truly blessed and can quite honestly say that I love my life. I love the man I am married to, the country I was raised in, the family I lean on for support, the two dogs I get to call my own, and each day I wake up with new breath in my lungs. I am blessed that the majority of this vacation I have been able to eat. I have been able to walk. I have been able to laugh and swim and enjoy time with my husband.

But vacation for me isn’t what it’s like for others. Each day the symptoms lighten up, I worry about them coming back. Everyone else is excited when my symptoms lessen even for a few days or hours, yet I rarely am. People think I am cured, but in the back of my mind I always remember that I am not and may very well never be cured. This is my reality.

Most people on vacation have nothing more to worry about than applying sunscreen lotion to their skin or aloe vera to their sunburn. While I certainly did have that to worry about this vacation, I had much more to worry about, too. Am I eating too much? Am I eating enough? Am I losing too much weight? Will the doctors be upset when I get back home and see that I’ve lost 10 pounds? Am I taking my medication at the right time? Am I taking too many pain pills or vertigo pills or nausea pills? Am I taking enough pain pills, vertigo pills, or nausea pills? Am I doing too much? Am I not doing enough? Will I disappoint someone if I tell the truth and say I don’t feel well? Will I regret it if I don’t do this activity? Will I regret it if I do this activity?

Every time I sit down in a restaurant, I am embarrassed. I feel self-conscious and often wish I had a sign around my neck that said, “Yes, I do like the food. No, I do not have anorexia. I have gastroparesis. Believe me, this is all I can eat. If I could eat more I would, but I would regret it and become severely ill.” Everyone thinks I’m being too sensitive. Nobody really notices, they say. But they do. I see it in their eyes and hear it in their questioning voices. “Are you done? You’ve hardly touched your food,” they look at me inquisitively. I turn my eyes downcast, look away, and say, “I’m just full,” when all I want to shout is, “I can’t eat!”

I often order only appetizers and lie and say I will be sharing food with my husband when we both know that’s not the case. I’m simply too embarrassed to tell the truth.

But why? Why am I embarrassed of the truth? I’m certainly not embarrassed of my disease. I’m certainly not embarrassed of my symptoms. But I’m embarrassed of the look I get, that look of pity, every time I share my story. I’m embarrassed every time I get “the look” that says, “your life must be awful,” or “I’m glad I don’t have what you have.” Not to mention that I feel like no one cares nor will they have even heard of my disease anyway.

I’m tired of having to answer the questions. Of having to answer after someone says, “Gastro what? Wait so it does what to your stomach?” It makes me ready to go make a shirt that says, “My stomach is paralyzed.” End of story. No questions asked. Yet to avoid all of this, I respond with the girly sounding response of, “I’m full,” even though I barely touched my food and had to beg my husband to eat three bites after I pushed my food around the plate to make it look like I actually ate.

I don’t know why I care so much. I know I shouldn’t care about what other people think. It’s hard enough to explain to my friends and family much less total strangers. They can’t understand how yesterday I ate semi-normally, though my semi-normal will never be even half of what a normal person can eat, yet today I can hardly eat a cracker. They will never understand because I will never understand.

Everyone wonders why I don’t become ecstatic when I start feeling better. The truth is, this is why. My life is such a series of ups and downs that I can’t become elated with every up or I will be devastated with every down. I have had to become apathetic and neutral or I won’t know how else to survive. High excitement always leads to a hard crash. I have experienced it over and over again.

Yet do I regret all of the things I have done that may have made me sicker this time? No, I don’t. Because if I play it safe, I won’t have a life. My life is already so different from others that I can’t take the risk of making it deviate any more from normalcy. I don’t believe God called me to lay on my back with no purpose in life or idly sit by and do nothing. I rest on the days I have to rest and live on the days I can live. That’s all I or anyone else can ask me to do.

Truth be told, I would feel bad even if I did lie on my back 24 hours a day. In fact, I would probably feel worse because the depression that comes from an idle life is devastatingly stifling for me. There are absolutely no words to describe it.

So while my life may never be normal, this is my normal. Normal to me is what I make it. So even when I’m on vacation and get knocked on my feet, I am so thankful to have been on my feet just yesterday! I am so thankful to have lived.

So for all those days like today where I want to give up, I have to keep reminding myself that this is the way I believe I am meant to live my life. No one wants me to live it in a bubble, fearful for what is to come. So if tomorrow I get feeding tubes because I ate a half a bowl of ice cream today, at least I lived. This doesn’t mean I can go out and recklessly live my life (reckless for me is eating full fat ice cream). Yet it does mean that I still need to live my life. And for every day I am given on this Earth, I intend to live my life and to live it more abundantly.

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