This isn’t a post I like to write. The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat. Except they usually go beyond calling me fat. They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse. In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have. It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions. They are here to take pot shots at my weight, and to imply that I’m not really sick.
But the thing is, even people who are not bullies have questions like this in their minds sometimes. And many people who are fat themselves, can be slow in recognizing that they have a disease. And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has. So understand when I’m writing this… the bullies didn’t goad me into writing it. I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.
And because fat people die every single day due to inadequate healthcare:
- When we get sick it’s recognized less often.
- We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
- If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer. (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
- If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain. (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
- Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.
These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones. To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.
So here’s the thing: I have gastroparesis. That’s a partially paralyzed stomach. It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system. It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach. Mine stayed in my stomach too long, therefore I have gastroparesis. End of story, there’s no arguing with that.
Symptoms of gastroparesis are a weird thing. With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is. Gastroparesis is different. You can have severe symptoms with fairly mild slowing of the stomach. You can have very mild symptoms in a stomach that’s almost stopped altogether. Nobody knows why this is.
Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat), feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain. (More on that later.)
I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer. When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits. Then I got aspiration pneumonia from the associated reflux. Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.
Being fat delayed my treatment.
People have this bizarre view that if a person loses weight, they just go from fat to skinny. They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny. So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me. They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster. Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office. They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart. It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat. Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin. But it took seeing me failing to eat every day before that knowledge could break through their own biases.
So they embarked on a program to bring my weight up. Yes, I said bring my weight up. Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment. The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight. That’s not how human physiology works.
They put me on every nausea medication they possibly could. I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol. Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube. They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future. But they were able to send me home on a diet of Ensure Plus and lots of nausea meds. It worked for a few months.
But my gastroparesis symptoms only got worse. They were getting worse in two areas. One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot. The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year. With bronchiectasis to make things even worse, the pneumonia was going to kill me. Secondly, I was losing weight again. I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day. It went down that fast within a couple of weeks.
So they agreed I needed a feeding tube if I were to survive. They didn’t agree that I should want to survive, but that’s another story I’ve told before. They did agree that I needed a feeding tube in order to survive. And eventually I got that feeding tube.
The thing about feeding tubes, for any skeptics out there? Is that they don’t give them out to people who don’t need them. Yes, everyone has heard of rich women who diet by using nasogastric tubes. But this isn’t a nasogastric tube, it’s a GJ tube. And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid. Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one. Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one. Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.
The above feeding tube? Only way to get it is because it’s medically necessary.
So why is a feeding tube medically necessary in a fat person?
Because feeding tubes are given for a very wide range of problems. In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.
1. I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy. My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.
2. I aspirate stomach fluid, which can be drained out of one half of my feeding tube. Continued aspirations would result in repeated infections until eventual death.
It’s the first one people don’t seem to grasp.
I’ll make it very simple: You can die from complications of rapid weight loss, before you ever become thin. You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin. And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.
Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat. My body had a lot of problems and I never even made it to thin.
I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss. My goal should not be weight gain either. My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there. Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.
For what it’s worth, right now I weigh 178 pounds. That is 67 pounds lighter than I weighed when all of this started. Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem. That is how every medical professional in my life has treated the matter.
The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures. Offline, people are constantly asking me about having lost weight. It’s not subtle. It’s not even close to subtle. My clothes hang off of me. My pants and skirts fall down if I don’t use belts or suspenders. My entire facial shape has changed. Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight. Medical professionals express extreme worry about the amount of weight I’ve lost. I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.
Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.
I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.
But back to weight and gastroparesis.
Not only is it not true that only thin people get gastroparesis. Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with. But gastroparesis can actually cause weight gain.
It works like this:
Gastroparesis causes the amount of calories that you get, to be restricted.
Your body at first loses weight.
Then your body goes into starvation mode. It notices that there are fewer calories. So it begins trying to hang onto every single calorie for dear life.
At which point your body gains weight again.
That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.
So “How can you have gastroparesis? You’re fat!” Doesn’t work on so many levels.
But this kind of thinking kills fat people who have diseases like this one. It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough. It kills fat people in general. The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease. And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well. Every. Single. Day.
I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway. The only food I take in is a nutritional supplement called Osmolite. It’s pre-mixed to be a certain number of calories a day. I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500. There is no other source of food for me. Any food I don’t eat by the end of the day is poured down the drain. Literally everything comes through the feeding tube. So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about. For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties. And it’s honestly none of your business.
So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post. If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.
Because the need for a feeding tube comes most often when someone can’t eat. When a fat person can’t eat, that is as dangerous as when a thin person can’t eat. You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency. And this is why plenty of fat people have feeding tubes.
We may have feeding tubes because we can’t swallow. We may have feeding tubes because we choke on our food. We may have feeding tubes to bypass a stomach that doesn’t work. We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us. We may have feeding tubes because our esophagus doesn’t work. We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat. All of these things are just as serious problems in a fat person as in a thin person.
I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people. Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight. You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.
But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube. And most of those dozens of reasons do not have a weight limit. So please don’t bully and harass fat people for having feeding tubes. And if you see someone you know doing the bullying and harassing, set the record straight. Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason. And the same is true for anyone else with a G tube, J tube, or GJ tube. These are serious surgical procedures that are never undertaken lightly.
As for the bullies, I hope I never have to live in a world where they run my medical care. I can just see them “You lost 70 pounds rapidly without trying? Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!” It’s ludicrous. And deadly. All of these attitudes contribute to the deaths of fat people with genuine health problems. And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.
A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious. Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”. Nor will I accept comments from bullies. This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about. Anything else will be deleted. Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…” This isn’t the time or the place for that crap, please respect that. This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.
P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people. Every one of you who targets me in this way has to know that in your heart. Have that on your conscience, if you have enough of one to bleed through all your cruelty. When it’s your turn to face yourself for who you are, you’ll have to answer for things like that. I hope you can manage.