The Questions That Stump Me as Someone With Gastroparesis
Ever since the diagnosis of gastroparesis crept into my life, so did the norm of being bombarded with questions on the daily such as, “How much longer until you can get rid of the tube?” and “Are you doing (or feeling) better now?” If I was being completely and brutally honest, this is a norm that tears me apart while managing to fill me with fear, anger, and sadness all at once. Imagine trying to run a race while having people make light of your weaknesses at every checkpoint along the way; it’s almost as if the people who you are relying on to cheer you along, are the ones who are tearing you apart. It’s running a race with a finish line that seems nearly impossible to reach.
Now don’t get me wrong… I’m overjoyed to know they are thinking of me and care enough to check in; and that is something I’ll forever be thankful for. Although, I would like to challenge them to put themselves in my shoes and to understand what these questions prompt in the mind of someone with gastroparesis.
To give a bit of background information, gastroparesis is a condition that affects the stomach muscles and proper stomach emptying. It is commonly explained and understood as paralysis of the stomach, meaning that one’s stomach muscles do not perform as they should. There is a broad spectrum when it comes to the severity of gastroparesis. Gastroparesis can both slow and completely stop the movement and flow of food from one’s stomach to their small intestine. Treatments can help make someone more comfortable but cannot cure gastroparesis altogether. More often than not, gastroparesis is a chronic, long-lasting and relapsing condition that can be very tricky to treat and manage. It often requires frequent hospitalizations due to the unpredictability of it and the possibility of going downhill real fast.
Since I’m asking people to put themselves into my shoes, it would only be fair to give some insight on what a day in the life of someone with gastroparesis is like. Although, since this is not the focus of my article be mindful that I’m only going to highlight a portion of it.
Gastroparesis means not being able to go out in public without a complete stranger making a comment about your “slender” figure; often they think they are complimenting you, although, little do they know you have barely any “meat on your bones” because you’re ill and your body is withering away on you against your will. On a similar note, strangers will stare at your tubes and you as a whole as if you are some different species, and it doesn’t stop there… they will talk about you in close proximity as if you can’t hear them — news flash, I can! Gastroparesis means enduring a pain that sometimes feels as if someone is taking a knife at your stomach and sometimes feels as if someone is twisting your insides.
Gastroparesis means being so bloated that you can fool your friends or family into thinking you’re pregnant. After all, it quite literally appears as if you have a baby in your belly. Gastroparesis means acid reflux and nausea every hour of every day, often leading to puking fitting right into your daily routine. Gastroparesis means the inability to eat and needing to get used to sitting down with family and friends watching them devour the foods you miss the most, holidays become your worst nightmare. You may also have days when your stomach decides it can’t even handle liquids and you’ll burp or throw up anything you try to put down so don’t even try, it’ll end up being a waste of your time… I’m telling you now.
I’m sure it’s hard to imagine a life like this when you are not the one living it. I ask those people to please try your best to imagine this being your everyday, and then somebody asking you when you are able to get rid of your tube. I cannot stress enough how much I wish I could give an answer to this, but truth be told — it is more likely that this tube is going to be a long-term or permanent thing than something that is temporary. Plus, even if I was to be able to “get rid of this tube” in a few weeks it’s not to say I will never need it back again in the future. My weight is extremely hard to manage and I can take steps backwards way quicker than I can see improvement.
Although, what irks me most about this question is that it implies that they feel as if my feeding tube hinders my life. While it may be a nuisance at times, I’m so thankful to have something that gives me the ability to wake up every morning. Reality is that without it, I would be dying. I would be withering away little by little and I would end up literally skin and bones, malnourished, and extremely weak. My feeding tube allows me to be healthy and it allows me to enjoy some normalcy, so when this question is asked I can’t help but to get a bit angry.
While they seem to believe that life can’t go on with it, I can assure you that they have it all wrong and completely backwards. My life is going on because of it. Don’t be so quick to believe that taking it away is the best option. Sure, if it was a matter of being healthy regardless of a feeding tube or not I would have it taken out in a heartbeat. Although, I owe finally feeling a bit better again to it and it has become a part of me. Despite it being the biggest pain in the ass at times I love it for keeping me healthy — you learn to own the tube taped on your face or in your stomach, and you become your own favorite nurse. Trust me, the pros outweigh the cons and the nuisance of it is a small price to pay for the gift it gives you.
“Are you doing (or feeling) better now?” is another question that leaves me stumped and dumbfounded. For the obvious reasons mentioned above, I’m not sure that my definition of “feeling better” or “doing better” is the same as theirs. Therefore, I am never quite sure of the response they are looking for. I also don’t believe that they understand how quickly my condition can change. I may never be better, and I know this isn’t the answer they are looking for. I’ll simply leave this off by saying that life with gastroparesis is no walk in the park. I’ll have good days and bad days, highs and lows, maybe if I’m lucky I’ll go into remission for a month or two but likely I’ll relapse shortly after.
My best advice to others would be to expect the worst and hopefully you and I both will be pleasantly surprised, to take everything I say with a grain of salt since my condition can change quickly, to be there for me when things get bad but also be by my side when things are good, and to remember that my feeding tube or whatever treatment I’m receiving that is helping me is most definitely my friend.
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