It’s about more than just pee

June 5, 2016

There’s political turmoil in the U.S. right now around bathroom use. Yes, you read that right. Transgender folks want to use the bathroom that corresponds with their gender identity and conservatives want them to use the bathroom that corresponds with the gender on their birth certificate. While I have some very definite opinions on this issue, there’s one aspect that strikes me as being more relevant for those who have certain chronic illnesses and other medical issues. Or who just poop when they’re not at home.

You see, the argument from transgender folks and their allies is that this is about a simple right: the right to pee. And it is. But it’s also more than that.

I see a lot of these memes, videos, and arguments. I share a lot of them on social media, too. After all, I fully support everyone’s right to pee in a comfortable, safe space. But the thing is, isn’t it about more than just pee? And I’m not just talking about having a private place to pick a wedgie, fix your hair and makeup, or take off those uncomfortable stockings.

For me, public bathrooms, and even private ones, were about more than just peeing. I had around 20 years of undiagnosed Celiac Disease and other food intolerances, so you can imagine what bathroom use was like for me.

I have an unusually strong bladder. I can often go for 4, 6, even 8 hours without peeing. But when I got *that* feeling, there was no choice.

There was the time I was on the highway, stuck in traffic. I got *that* feeling. I knew it was bad. I looked at the stop-and-go traffic and I wondered if I would have to have diarrhea in the grass on the side of the highway. Thankfully, just in time, I got off the road, into a motel parking lot, and found my way to a bathroom. Thank goodness!

Then there was the time I was seeing a show on Broadway for the first time. I was so excited! Walking to the theater, I got *that* feeling. We rushed to the theater, thinking I could quickly use the bathroom, but the doors weren’t opened yet and there was a line to get in. I rushed to the hotel next door, but a guest card was needed to use the bathrooms. I asked at the desk, but they wouldn’t let me use a toilet. I went back to the theater. The doors were open and my mother was almost to the front of the line. I was desperate. As soon as I was through the door I ran to the bathroom. The line for the ladies room snaked down the hall. I ran to the front and asked if I could cut the line. A woman in front said yes immediately, and others followed her lead. I hate to think what would have happened if she’d said no. Maybe she saw the desperation on my face. Maybe she noticed that I was turning a bit white, or even green. Maybe she was just a compassionate person who always helped others. Whatever it was, I was grateful. I ran into the next open stall, and sat down as I felt what seemed like everything I’d eaten in a week leave my body. I was there for a long time. I eventually made it up to my seat, and was still feeling a bit ill. Before the show started, I got the feeling again. I ran back to the bathroom. It was close to curtain, so there was no line. I sat there alone, in the quiet, grateful for the toilet. I got back upstairs just as the opening number began, thankfully feeling much better.

I’ve had more incidents like this than I can count. There have been times I didn’t make it to a toilet in time. Thankfully, those were not in public places. But they could have easily been.

The point is, sometimes it’s about more than just peeing. I’m cisgender, so obviously this particular issue of which bathroom to use doesn’t affect me directly. (It does affect several friends, many acquaintances, and countless people I don’t know personally but who should obviously have the same rights as everyone else.) Still, I can’t help feeling a twinge at all of the talk about how “it’s just about peeing.” No it isn’t! It’s also about pooping! Don’t forget the pooping!

I want to shout it at the tv, at my computer screen, and at every person who says, “it’s just about peeing.” I get their angle. They want to eliminate the politically-motivated distractions being used to force the issue. But let’s not erase the very real problems that so many others are dealing with. It’s about pooping too!

There are certain things all humans do. I get that most people don’t want to discuss them all. But really, why can’t we talk about poop? If we can wipe a baby’s butt, clean out the cat’s litter, and pick up the dog’s poop from the street, surely we can recognize that trans+ folks will need to occasionally poop in public too. And when they do, they need to be able to do it in a safe place.

Because if I hadn’t had a safe place in that theater, it could have been a very messy experience. And no one should have to go through that.

So for all of you out there with IBD, IBS, Crohn’s, Celiac, or any other digestive issue, and for those who simply need to poop, I support you. Let’s win this thing! #itsaboutmorethanpee

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It feels so good to be included

June 22, 2015

Over the weekend we had a family thing. As part of the thing, we ate. Simple, right? Well, it’s not quite so simple when you have a lot of food restrictions. But it gets a lot easier when it’s at my mom’s house.

My mom is amazing. She has always been my biggest supporter. Now, with my food issues, she goes out of the way to have food I can eat. There’s gluten-free bread in her freezer and gluten-free crackers in her pantry for when I visit. When I’m there, she prepares meals I can eat. She thinks it’s absurd not to do that. Fantastic, right?

She wasn’t planning to cook this weekend, though. Because of the way things were scheduled, the plan was to get takeout. My aunt wanted to pick up some prepared foods from an Armenian shop near her. My mom asked if I could eat that food and I said no, but that I’d bring my own food.

I always offer to bring my own food. I always say I don’t mind, but the truth is that I do. It sucks having to always bring my own food. It feels awkward when I’m invited to dinner at a friend’s house. I stand out at potlucks. I have to cook more and prepare more than other people do. Logistically it’s hard to always carry it. It’s a pain in the ass, really. And I have to eat the same old boring dishes while everyone else gets to enjoy something new and exciting. Still, what else can I do? I can’t always expect others to prepare gluten-free, dairy-free, broccoli-free, kale-free, peanut-free, alcohol-free, corn-free, caffeine-free etc. foods. It’s too much. So I bring food with me wherever I go.

In this case, there would be 13 people, and I didn’t want the others to have to accommodate me. My mom, ever the ally, made the offer, though. She asked where I could eat. So I listed a few general options. Indian food usually works, for example. My wonderful mother decided we should all eat Chinese food, one of my favorites, because there’s a Chinese food restaurant near them that has a lot of gluten-free dishes, and I’ve eaten there before, so we knew it was ok. I asked that my gluten-free dish be set aside separately, so it wasn’t contaminated.

But that wasn’t good enough for my mom. Oh no. She made sure all of the food was gluten-free! She and my aunt intentionally made sure every item they chose was gluten-free. She carefully stated it several times when she placed the order. And, sure enough, I could eat every single dish on the table! Sure, I skipped a couple (I don’t like shrimp and ribs don’t appeal) but I ate each of the others and loved it. Even better, I ate the way everyone else did. I didn’t stand out at all. It was such a treat!

I don’t expect every person to always find a way to include me in their meal plans. That simply isn’t realistic. But it’s so damn great when they do! Thanks Mom!


That time I didn’t have anorexia

June 19, 2015

I was horrified when I looked in the full-length mirror and saw how thin I was. I forget why I was looking in the mirror while I was naked in the first place. I usually only looked it in to check my outfit, but that day, I was naked, and I was shocked. I immediately went to my mother and showed her. She took me to the doctor. I was diagnosed with anorexia. I insisted I wasn’t trying to lose weight. They assured me they believed me, that this was a different type of anorexia, that they knew it wasn’t intentional. If I’d only understood then what I understand now, I’d have recognized the bullshit.

I hadn’t thought about that in a long time, but I’ve been reading this book on Celiac Disease and it’s really opened my eyes to a lot of misdiagnoses in my past. As I read about eating disorders, this memory came flooding back to me. I remember being weighed; I was 89 pounds (and about 5’0″ tall.) I was told to drink high protein shakes. The nutritionist wanted me to gain 11 pounds in the next two weeks. I gained a lot, but not that much. I had to continue with the high protein shakes and eat more at every meal. She wanted me to eat more high calorie foods, too. That was my treatment.

Now I wonder how different my life might have been if they’d asked me questions about my health. Instead of assuming this underweight teenage girl was anorexic because she was underweight and a teenage girl, what if they’d probed more? What if they’d recognized my own fear – after all, I was the one who told my mother I needed to see a doctor to find out why I was so thin – and considered other options? What if, when I told them I sometimes skipped meals, they had let me explain why? (I tried to explain but they wouldn’t listen.) Maybe they would have learned about my digestive problems, about how often I was doubled over in pain, about how frequently I had diarrhea. Maybe it would have occurred to them that I wasn’t absorbing nutrients properly.

The doctor and nutritionist terrified me. I’d never had an eating disorder, and suddenly I became anxious about food for the first time in my life. They insisted I had to eat three meals every day. This meant that if I slept in and ate brunch at 11am, I needed to squeeze in another meal before dinner. In college, I would get out of bed early on Saturday to eat breakfast before heading to brunch with my friends an hour later. It didn’t stop the diarrhea, and it certainly made me worry about food constantly, but it did keep me from being quite so thin. I maintained a weight of around 100-105 for a long time. It was better, but still too low.

I don’t remember when my perspective changed, but it did. At 22 I insisted on seeing a gastroenterologist and was diagnosed with IBS for the first time. The appointment was 10 minutes long, with no physical examination, just a recital of my symptoms and then a diagnosis. I wasn’t told there was a diet to follow. I learned that on my own a year later when I accidentally found a pamphlet in a doctor’s waiting room. My first colonoscopy and endoscopy were years later. They ruled out Crohn’s disease and cancer. Then I was on my own again with the IBS diagnosis. I was still constantly sick. My next endoscopy with a different doctor didn’t give me any more information, but it changed the diagnosis to IBS, reflux, and some mystery ailment. The doctor said she wasn’t sure what it was, but that IBS and reflux alone didn’t explain my symptoms. Then she said she couldn’t do anything else for me. I have no idea if either endoscopy checked for Celiac. Maybe they did and the damage to my intestine wasn’t visible yet. Maybe they didn’t look.

It wasn’t until age 32 that I tried going gluten free. My primary care doctor didn’t want to test me for Celiac or send me to a nutritionist. I pushed on seeing a nutritionist and she gave me a referral to someone who was very nice but who, as it turned out, had absolutely no experience with gluten free diets. No wonder it took me another TWO AND A HALF YEARS to eliminate all of the gluten contamination in my diet!!!

I assume that I don’t have hidden gluten in my diet anymore because, for the first time in 20 years, I don’t have nausea, diarrhea, constipation, and abdominal pain on a regular basis! The feeling is miraculous and I am constantly thankful to be free of it all.

Still, I have to wonder, how might my life have been different if, instead of assuming that every underweight teenage girl was anorexic, that doctor had actually examined me and maybe figured out that I had Celiac Disease or gluten intolerance? (Note: I don’t know which I have because I was never tested and the only way to test for Celiac disease is to eat gluten again, which I can’t do. My doctor should have tested me before I started the diet.) Ok, gluten intolerance wasn’t known 20 years ago, but Celiac Disease was, and they never even considered it. For that, I may never forgive them. I’m just so grateful that I finally took things into my own hands, did my own research, and got better. And next month, for the first time ever, I’m seeing a Celiac specialist! I can hardly wait!


Healthcare fail: the diagnosis that wasn’t

May 24, 2015

The details may change, but the gist is the same. The symptoms are there, the request made, the answers not given, the diagnosis left unmade. It’s happened to many of us. It’s happened to me several times, actually. I’m still wondering how it happened with my Celiac Disease. Of course, technically I haven’t been diagnosed with Celiac to this day….

The first doctor ignored me for a while. When I was insistent that I wanted to be tested for lactose intolerance he said there was no test for it. Instead, he had me keep a food and symptom journal. He sent it to a nutritionist, then reported back that I didn’t have lactose intolerance. He didn’t care to investigate further. Last year I found the nutritionist’s letter in my records. She’d said it didn’t seem to be lactose intolerance but there was clearly something going on and she wanted to see me. I never got that message.

Then there was the gastroenterologist who diagnosed me with IBS after 2 minutes of a 10 minute appointment. He gave me a prescription to take before meals. Funny, but those pills never seemed to help. A couple years later I found a guide to an IBS diet on my own and followed it the best I could.

Another doctor took me seriously, at least, but was woefully inadequate. He ordered a colonoscopy to rule out Crohn’s, since an aunt had that. It was ruled out and my symptoms continued to be attributed to IBS. Well, my gastrointestinal symptoms did, anyway. It was assumed my other symptoms were completely unrelated. How convenient for them. How horrible for me.

Then there was another gastroenterologist. She did an endoscopy. I wonder if she checked for Celiac? I would hope so, but she never mentioned it. She said she was checking for reflux. She doesn’t practice any more and I haven’t had a chance to find her notes in my hundreds of pages of records. But I do remember her diagnosis: IBS and reflux, plus something else that she wasn’t sure of, but I shouldn’t be too worried. I’m not kidding! That’s what she said! She said that my symptoms could not be entirely explained by IBS and reflux so there had to be something else. I was sure I didn’t have reflux. My aunt and grandmother had it, and my symptoms weren’t anything like theirs. Still, I took the pills she prescribed. And I got worse. Sigh.

At last my rheumatologist suggested I should get tested for Celiac. In hindsight, I can’t believe no one suggested it sooner! I have classic symptoms. It even took my rheumatologist a while – I’d been seeing her for several years when she brought it up. I resisted, of course. I didn’t want to give up my favorite foods. And I was scared. Anything with food was scary, since I was so sick so much of time. Still, I might have let her run the test. If only she could. Her department didn’t let her run any tests that weren’t part of her specialty. The computer system didn’t even offer it as an option! She could run my blood count and ANA every day of the week, but no Celiac tests.

On the bright side, she put the idea in my head. That meant I was more open to it several years later when I was doing hypothyroid research and came across the link between Hashimoto’s Disease (autoimmune hypothyroid) and Celiac Disease. Many Hashi’s patients have Celiac or gluten intolerance, so some professionals recommend a gluten free diet. Hmm. It made sense. After reading that same advice from several different sources and thinking about my symptoms, I knew I had to give it a try.

I talked to my new PCP (primary care physician), who didn’t think I needed to worry about it. She hadn’t heard of the link and seemed doubtful about the research I had come across. She dismissed my symptoms as being IBS. Going gluten free was the new fad diet. I told her I wasn’t doing it as a trend or to lose weight. I pushed her, and she gave me the necessary referral to see a nutritionist. She didn’t run any tests.

The nutritionist took me seriously. She gave me useful information. I was on my way.

I knew that if it worked, I’d have to eat gluten again in order to be diagnosed. I was looking forward to it; I’d get to eat my favorite foods again for weeks! How great! You see, after being gluten free for a while the antibodies die down and the intestine heals, so there’s no way to run an accurate test. The only way is to eat gluten again. The better way is to be tested before going off gluten in the first place.

Eating gluten sounded great at first, but something changed. I stopped feeling nauseated every day. My diarrhea almost completely disappeared. The cramps were gone. The gas and bloating went away. The pain that put me in agony, pondering if death would be better, was no longer a weekly or bi-weekly occurrence. I was free! I could live! I could go to the park for the day without worrying about not being near a bathroom! I could join friends for meals without worrying about being sick for hours afterwards!

Yes, I occasionally get glutened and it’s all kinds of horrible. That pain and nausea and diarrhea all return with a vengeance, but at least I know that it’s temporary. The worst of it lasts a few hours, and the lesser symptoms linger for a few days. I know from experience that it could be so much worse. And most days, I don’t have any of that! I’m grateful every single day that those symptoms are gone.

It hasn’t been easy. Eating out is all kinds of challenging now. But it’s completely worth it. It’s so worth it, that I have no desire to eat gluten for even one day, never mind for the weeks that would be required for testing. I’m incredibly careful to avoid even a tiny amount of accidental exposure. I’m not about to do it intentionally. So I remain untested. Maybe I have gluten intolerance. Maybe I have Celiac Disease. Does it matter? Either way, I’ll be avoiding gluten. (And yes, the difference matters because of secondary issues, but I’m still not going to get tested.)

Unfortunately, though, damage has been done. After what I suspect was 18 years of undiagnosed Celiac Disease, I got pretty damn sick. I’ve been reading about how some researchers believe untreated Celiac can lead to Hashimoto’s Disease, which I developed. Hmm. And we know that my poorly treated Hashimoto’s led to adrenal insufficiency. And that led to me having to leave work. I don’t think untreated Celiac caused all of my health problems, but it sure led to a lot of them.

I try hard not to dwell on the “what ifs” in life, because it doesn’t help. Still, from time to time, I wonder what would have happened if that first doctor had taken me seriously 20 years ago. Could I have avoided most of this?

Or course, there’s also the flip side: what if I had listened to my doctors and believed that my problems had nothing to do with gluten? How much sicker would I be right now?


What’s your diagnosis?

December 5, 2014

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?


Health insurance should cover a bidet for anyone with a GI illness

September 21, 2014

Sometimes things get messy… down there. It happens. And when you have diarrhea on a regular basis, including explosive diarrhea, maybe it happens a bit more than healthy folks might expect.

As recent readers know, the last few weeks have been especially difficult for me. Still, I’ve been pushing through. I was doing ok, but the last few days have been incredibly rough.

And so I wasn’t feeling great this morning as I read my Facebook feed and slowly ate my breakfast. The stress was getting to me. I’d barely the last 3 nights. I was pretty sure I was all cried out…. at least until the funeral tomorrow. Who knows what that would bring. And how would I make it through the day? The funeral, sitting shiva, the long drives…. would I make it? I tried not to worry about getting over to be with the family again today, figuring I could rest all morning and afternoon and head over much later. I wouldn’t even get dressed, just stay in my pajamas until 3pm. I tried not to think about it. I tried not to think about how my grandfather looked when I visited him on his deathbed less than 48 hours ago. I tried not to think about the hell that my mother and her siblings were going through. I tried to remember the good times. And there were so many good times. I am endlessly thankful for that.

I sat there feeling pretty good emotionally, all things considered. I was hanging in there physically. I was doing ok. I was going to make it. And then instead of feeling gas released by a fart, I felt poop. Yes, I was pooping my pants. This has happened a couple of times before, but with all of my recent improvements GI-wise, I thought it wouldn’t happen again. But it did.

I bolted from the chair and ran for the bathroom. I took just a couple steps and realized the room was fuzzy. One part of my brain knew the problem, and of its own accord my hand reached up, pulled off my reading glasses, and threw them down. I never broke stride. I made it to the bathroom. Most of it ended up in the toilet. It was just liquid. I felt weaker than before, but I managed to wash out my favorite underwear (how unfortunate!) and my favorite fleece pants (just as unfortunate!) but my ass still wasn’t entirely clean. Things had gotten messy, and thanks to my joint problems in my hands, wrists, and shoulders, it was hard to clean up. Worse than what I usually have trouble cleaning up. So I got in the shower.

I stood in that shower for a long, long time. I hadn’t wanted to shower so early, or maybe even at all today. Showering takes so much energy, and that wasn’t energy that I had to spare. But what were my options? So I stood in that shower and thought, not for the first time, about how much I wish I had a bidet. I used one once when I was in Europe and I liked it. I’m pretty sure if I had one now, I’d be using it often. There are so many days when it would help, but few as bad as today.

We don’t talk about this kind of thing often. But a few weeks ago I was talking to a friend who also has GI problems and we talked about those uncertain farts, and how we can never be sure if they’ll really be farts, or if we’ll end up pooping our pants. I was relieved to hear I wasn’t the only one dealing with that, but sad for her that she has the same problem. And why shouldn’t we discuss it? Yesterday, after hearing about my grandfather’s death, I stood in the shower and cried – sobbed, actually – for ages. I felt my nose start to bleed, but I only stopped crying when I felt myself choking on the blood. By the time I got out of the shower I’d forgotten about my bloody nose until I brushed my teeth. I looked in the mirror and saw the blood dripping down. And I feel like I can talk about that, so why not talk about gastrointestinal problems?

So I’m throwing it out there right now, so all of my fellow CI-ers can remember that if you have similar problems, or maybe something entirely different that you find embarrassing, you’re not alone. We all have our stories. We might not talk about them publicly, but we have them.

And if you’re looking for a safe space to share your own otherwise-embarrassing stories, just post them here in the comments. I won’t judge. (And you can use an anonymous name if you want.) Remember, you’re among friends. And at least a few of them have pooped their pants.


What I really mean when I say “I don’t mind”

July 16, 2014

Many of us project our feelings onto other people. I hate mushrooms, so you must also hate mushrooms. I would love to go to Europe, so I’m sure that guy over there wants to go to Europe. It happens a lot. But when it comes to my health issues, it bothers me when people not only project their own feelings onto me, but then don’t accept my corrections.

I try to be polite and not complain about things. So sure, maybe I won’t say if something is bothering me. But I don’t lie. So if I say that something doesn’t bother me, then it does. If I say that it does, then it does. Simple, right? You would think so. But you’d be wrong.

I went to a wedding this weekend. Of course my health problems limited me and altered my activity a lot. Some things I minded and some I didn’t. I minded having to leave the rehearsal dinner early. I minded not being able to walk around the city more during my free time. I minded not being able to dance at the wedding. I minded having a racing heart and horrible nausea for several hours one night. I minded leaving the wedding early. I minded the pain I was in. I minded a lot.

What I didn’t mind was the food.

It’s not like I expected to eat the way everyone else ate. I made it clear to the bride and groom that I was very appreciative of their accommodations for my diet. They got me special meals that I could eat. It was fantastic of them. They weren’t the problem. It was others.

I spent too much time at the rehearsal dinner answering my table-mates questions about my special meal. They kept expressing concern that I couldn’t eat this or that, and I kept saying that I didn’t mind. Then the same thing happened at the wedding itself with different table-mates. I wanted to just talk about normal things, and instead I answered all sorts of questions about what it means to be gluten-free, how I handle it, etc. Again, they felt bad I couldn’t eat all of the rolls, desserts, and other foods. Again, I assured them that I didn’t mind.

Because I didn’t mind!

Food is important to many people, and I don’t just mean as a source of nutrition that keeps us alive. People have emotional associations with food. People think food is terribly important. I’ve gotten sick off of food for about 20 years now, so I would be happy to never eat again if there were pills I could take instead. I have some positive associations with food, but more negative ones. And even if I really do want to eat something, I want to not feel sick even more. I don’t feel like I’m “missing out” when I avoid eating something, as long as I can eat something else then or soon after.

But too often, people don’t believe me. They think I’m just being polite. They think I’m downplaying my despair at not being able to eat the same food that they eat. I wrote about this a while back with “The oh-I-could-never-do-that response” and this disbelief is just a projection of that feeling. Apparently many people can’t imagine that anything could ever be more terrible than missing out on, say, a piece of wedding cake, and so they express sympathy, because eating cake is so important to them. As if missing it is the most horrible thing happening in my life. I wish.

So for all of you out there, the next time someone says they don’t mind missing out on something because of their health, consider the possibility, just for a moment, that they mean what they say. Consider that some things just aren’t as important to them as they are to you. Because maybe, just maybe, that’s the truth.

What about you? Have you had someone doubt you when you say you don’t mind missing something? Do you get frustrated when you say you have to miss something and your needs aren’t respected? Is it difficult to explain why you mind missing some things and not others? Please share in the comments!


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