The problem with the “don’t make events about food” advice

February 22, 2022

Maybe you have celiac disease or another food restriction like me, or maybe you have another limitation that causes issues for you at social gatherings. If so, you’ll relate to this. And if that’s not you, this may put things in a slightly different perspective for you.

I grew up in a family that made a big deal out of food. Holidays, were always about food. I get it, that’s how Jewish holidays are. Challah, hamentaschen, wine, matzo ball soup, latkes, and kugels were all staples. Thanksgiving had turkey, pies, potatoes, and kugels. When we visited family out of state or they visited us, it was all about the food. We thought about it, talked about it, spent lots of time preparing it, and of course, enjoyed eating it. As I grew up, I often felt sick after (or during) these events, but I often felt sick after (or during) a normal meal anyway, so it’s not like these were any better or worse. It wasn’t until my 30s that I stopped eating gluten.

Image credit Heartland Mom on Pixabay

I have often wondered how my grandmother would have handled things if she’d still been alive when I went gluten-free. She was the stereotypical Jewish grandmother, always cooking and baking, expressing her love through food. We would arrive at her house after a several hours long drive, having stopped for lunch on the way. She would ask if we wanted food when we arrived and we’d say no, we’d already eaten, so she would put out a “snack”. It was a large snack! Then a few hours later dinner would consist of chicken, brisket, at least 2 kugels, challah, salad, and more, along with multiple desserts – for only 6 people! I’d like to think she’d have found a way to adapt her meals for me, but I know she wouldn’t have stopped focusing on them.

The surprising (at first) thing with eliminating gluten is that it doesn’t only effect what we eat, it effects our social lives. Dates are tricky when I can only eat at certain restaurants. Going out with friends is tough when we can’t spontaneously grab food while we’re out. Attending weddings, bar mitzvahs, and other events is frustrating when I can’t eat the food provided. Multiple surveys have shown that the social aspects are the hardest part of living with celiac disease. So the advice that we hear over and over is logical: don’t make events about food, make them about people. And after all, shouldn’t we all be doing that anyway?

I get it. If the focus at Thanksgiving is the people instead of the table of food, then the people who can’t eat all of the food, and who might be nervous about the food, can still have a great time. If the Passover sedar is about the people and the prayers and we let the matzo ball soup and brisket be secondary (or even tertiary) incidentals, anyone with food restrictions will have a better time. It makes sense.

People > Food.

It took me many years to figure out why that advice felt off to me.

I remember a family vacation. We were in a big rented house, and I had been careful to cook food in advance. It was annoying to have to do this, and definitely took away from some of the fun, but it was fine. There was one night when everyone wanted to eat at a fancy restaurant. The family had been to this city many times over many years and loved this place. I’d only been once and, frankly, I hadn’t thought it was so wonderful, but whatever, I’d have been willing to go back. The thing is, they didn’t have anything gluten-free. My choices were to go there and not eat, or not go. I chose to not go. I found another restaurant in town that had gluten-free food and my mom chose to join me. My mom and I had a fantastic time, actually. We walked around town and had one of the best meals we’d ever had together. The food was amazing, the ambience gorgeous, the company perfect. My dad, aunt, uncle, cousins, and cousin’s wife all went to the other restaurant, and I won’t pretend I wasn’t hurt. I understand they liked this place and wanted to go, but it hurt me that they didn’t place my feelings and their desire to be with me above their desire to eat at a specific restaurant. They talked about it a lot in advance and a lot afterwards, too.

Holidays and family gatherings have been different since I went gluten-free. When my mother hosts, she makes sure the meal is either completely or mostly gluten-free, with any gluten foods kept separate and reminders to all to keep their serving spoons away from other foods. Accommodations vary when others host. But either way, it’s still about the food, and food is still stressful. Even when the meal is 100% gluten free, I no longer get any joy from focusing on food. It’s simply associated too much with negative things for me. Plus, the talk about the food isn’t limited to the food on the table, and that’s even more stressful. I am immensely grateful that my mother goes out of her way to make me feel comfortable eating the food at her events, but I still wish we could focus less on the food altogether.

As for me hosting a family event, that’s not likely to happen. For one thing, my apartment is small and I don’t have a lot of space. But for another, I have no desire to host. Some people love to cook, decorate, and have lots of people over for a party. That’s not me, and it never has been. Plus, even if I wanted to do that, I don’t have the energy for it. I can cook a meal OR attend a gathering, but I certainly can’t do both, never mind hosting duties. When I go to someone else’s home and bring food with me, it’s always something that can be prepared a day or two in advance because doing it the same day is too exhausting for me.

But let’s be realistic. Even if I could find a way to host, there would still be the issue that the gathering would be all about the food because I might be able to change the circumstances, but I can’t change the people. As soon as they walked in they would ask what we were eating, and the conversation would often turn back to food throughout the gathering. If I made all of the food then I wouldn’t be worried about that food in particular, but I still don’t like these conversations. Inevitably people talk about other foods and about restaurants, and at best none of this is enjoyable to me, at worst it upsets me, triggering all sorts of past trauma.

I don’t have a solution. This is something I’m continuing to work on for the sake of my own mental health. I can talk to my family about it and maybe they will occasionally make an effort, at least some of them would, but I know that most would not even try, or they would soon forget. This is ingrained and it’s something they enjoy. I just wish the thing they enjoy so much wasn’t the thing that brings me the most grief.

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Insensitive, Isolation, Kindness, Limitations, Rants, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Sometimes the bare minimum is plenty

November 13, 2021

I’ve been wanting to write for weeks but it’s just been too much. I’ve been having a really hard time lately.

Thanks to medication changes, my adrenals aren’t being properly supported, so I have both less energy and lower tolerance for handling stress. And in a few days I have a colonoscopy and endoscopy.

Colonoscopies aren’t a big deal for most people. Not that anyone loves getting them, but you just deal, right? Well, thanks to a decades-long history of medical trauma, medical procedures can be triggering for me. And thanks to decades of undiagnosed gastrointestinal symptoms, GI stuff is also triggering for me. So knowing that in two days I’m going to have to drink a formula that will probably make me throw up, and that will induce the kinds of GI symptoms that I’ve struggled with for most of my life, followed by a medical procedure, where I’ll be up close with people during a pandemic…. yeah, my anxiety is at an all-time high.

Logically, I know it will be all be fine. But logic isn’t helping. My therapist gave me some breathing and thought exercises which help, and I’m just trying to make it through this period. It’s rough.

To make it a little easier, I’m doing a few things that I don’t usually do:

  • I cried. I spent a lot of my life learning not to cry because if I did, people thoughtI was just trying to get attention. (Yup, as a 12-year-old with chronic pain, that’s what I was told by several doctors and teachers. Thankfully, my parents never thought that.) Now, I don’t cry easily. For a week I really felt the need to cry, but I couldn’t let it out. Finally, though, I cried. And then I sobbed. And then I sobbed some more. I cried a lot that day, and it helped a lot. I cried a bit yesterday. I’m still having trouble crying as much as I need to, but I’m working on it. It helps to let it all out.
  • I asked for help. I don’t do this often enough. I posted on my Facebook page, asking friends to make phone calls to manufacturers for me. I was trying to find a gluten-free version of the easier colonoscopy prep. I had made a few calls, but it’s so stressful. For one thing, making any of calls for gluten-free stuff is stressful and exhausting and I’m tired of doing it. But then, doing it for this purpose…. it was just too much. A fabulous friend did the research. She called everyplace on my list, then did more research to find more to add to the list. She struck out, but if she hadn’t called for me, then I would have felt like I had to, and I would have been upset with myself for “failing”, thinking that maybe if I’d made the calls it could have been easier.
  • I asked for help again. Several friends had volunteered to help with the calls, so when that friend struck out, I asked for more calls. Since I couldn’t get the easier prep, I wanted to get an anti-nausea pill to help with the one I’ll be doing. Again, I needed something gluten-free. Three people called pharmacies all over my area to ask which manufacturers they used for this med (there are quite a few who make it), and then called those manufacturers to ask if the med was gluten-free. Again, they struck out. But again, if they hadn’t done it then I would have felt like I had to. It was so great of them to make those calls.
  • I asked to borrow a puppy. No, really! I have neighbors with two of the sweetest, most adorable puppies. Both are house-trained and don’t chew on stuff, so they’re not too hard to watch. I asked if I could borrow one, and the timing worked out that I took one for an hour. He cheered me up SO MUCH! Dogs are great medicine. Normally I would have felt silly asking, but I’m glad I did. And they were glad their dogs could help.
  • I’m giving myself a break. My to-do list is short right now. Really short. And even then I know it’s ok if I don’t get most of it done. In a typical week this amount would be easy to do (my list is usually twice as long), but not now. For example, today’s list is: laundry (already in the machine – win!), vacuum (if it doesn’t happen, that’s ok), prepare some work for my volunteer gig (they know I’m struggling and that I may have to cancel tomorrow’s meeting if I can’t get it done, but I think it will be doable), walk (fresh air is good for me), and watch YouTube videos while relaxing with my knitting. My hope is to get everything done before lunch except the last two. That way, I won’t have anything I need to do this afternoon except enjoy a walk and relax on the couch. And honestly, the vacuuming is unlikely. And that’s ok. The rest of my week is even easier than today.
  • I’m avoiding anything emotionally taxing. When a friend brings up a stressful topic that isn’t necessary to discuss, I ask to change the subject. Stressful movies and books are on hold. I’m keeping it as light and easy as possible. Last night I watched an animated Disney movie and that was perfect.

Is this all enough to make me feel great? No, of course not. But it’s enough to make me not feel worse, and that’s a win. I’ll keep spending time with dogs, watching easy movies, doing my crafts. I’ll keep my to-do list short. I’ll ask for help. I’ll spend time with dogs. (Oh, did I say that twice?)

In a few days, after the colonoscopy, I’ll feel better. Once my medication is back to working properly, I’ll feel even better. (I tried to time things so that it would be back before the colonoscopy, but my doctors were really slow to get back to me about how to proceed after we got the test results.) This isn’t the post I planned to write. That one has to wait. And again, that’s ok. But it’s one that felt right to write. We all have times where we’re struggling more than usual, and it’s ok to do the bare minimum for a while. That’s definitely my plan for now.

6 Comments | Gastrointestinal, Healthcare, Kindness, Limitations, Medication, Rants, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

Screenshot_20200720-121807

Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.

Leave a Comment » | Expectations, Fatigue, Frustration, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The inconvenience of diarrhea – even at home

February 5, 2020

No one likes to talk seriously about poop. It’s something we all* do, yet it’s treated as an unsafe topic. Commercials for diarrhea medications are laughed at by people. Folks snicker at farts. No one feels comfortable on the phone saying, “Hey, let me call you back in a few minutes. I just need to run to the bathroom.”

For most people, it’s easy to avoid the topic. They don’t think about their poop much. But then there are those of us with digestive issues. I talk about poop with a lot of my doctors. Color, size, consistency, frequency, and odor are questioned and explained. I keep an eye on things. For too many years, I didn’t realize how abnormal my bowel movements were. If I had, maybe I could have been diagnosed a lot sooner. If my doctors had asked my questions about it, I’m guessing I would have been diagnosed sooner.

Well, here on Chronic Rants, we talk about poop. And today’s rant is about the inconvenience of diarrhea. I was having a perfectly fine day yesterday. I was being productive around the house. I wasn’t feeling motivated to work on a project that I’ve been trying to get done, but aside from some reduced motivation, everything was normal. I was on track to go out in the afternoon and evening.

In the afternoon I felt off somehow. I’m still not sure how. Maybe a bit low in energy? I decided to stay in for the afternoon and only go out in the evening. My stomach started to feel a bit off. Again, I’m not sure what exactly felt wrong, but something did. I pushed myself to go for a walk. It was a nice walk, with a clear blue sky overhead – a real treat! I stopped to chat with a neighbor and pet her dog for a while. I wasn’t feeling quite right, but I pushed through; at least I was petting a cute dog!

When I said goodbye to the neighbor I continued on my walk in a big loop that would end up at my apartment building. Then I felt that feeling and I knew: I better get home. Quick. I cut back to take a shorter route home. There wasn’t much I could do. I was walking within my apartment complex, so there were no public bathrooms around. I walked faster. I saw a neighbor that I know up ahead. I slowed a bit so we wouldn’t cross paths. I hated to slow, but making small talk would have been worse. I knew I was walking funny, trying to clench certain parts and walked quickly at the same time. I got into my building and felt that bad feeling. I fumbled to open my door. I tore off my coat and rushed to the bathroom. In my anxiety, I fumbled with my pants. I got them down just in time.

I think a few more seconds could have been my downfall. But I made it. Explosive diarrhea isn’t fun, but having it in public and in my pants would have been so much worse.

I felt a bit better after that. I had gotten the bad stuff out of me, whatever that might have been. But here’s the thing: I felt messy. I cleaned my ass area the best that I could, but it wasn’t good enough. I don’t have a bidet. Chances are, I was clean anyway. But I didn’t feel it. So I jumped in the shower. I had already showered that morning. The diarrhea had left me feeling weak and tired. But what else could I do?

I got undressed, then found myself back on the toilet. Eventually I took that shower. The hot water felt great. After a while, I got out, exhausted, but feeling better.

Obviously I wasn’t going out. I couldn’t be sure the diarrhea was over and, even if it was, I was now too weak to go out. I put on super cozy cloths and settled under a warm blanket. I spent the night watching tv and knitting. At some point I wanted food and decided to keep it simple. I cut up some garlic onions, and carrot. I added homemade chicken broth from my freezer. I threw in shredded chicken that I keep in my freezer. I added gluten-free ramen noodles. Voila! An easy home made chicken noodle soup. It was just the right dinner for that kind of night.

I woke up feeling like shit, no pun intended. That diarrhea could have been so much worse. Still, it stopped me from doing so much yesterday, and today as well. It’s frustrating as hell. And it’s not something I can talk about in a socially acceptable way. I can talk about a recent sprain and my friends shower me with sympathy but bring up diarrhea and suddenly I’m persona non grata.

We all* poop. For some of us it’s more of a struggle than for others, but it’s something we all* do. So maybe it’s something we should all be able to talk about? What’s your experience been with this type of situation? Let’s talk about it!

*Folks with colostomy bags still produce feces, though the verb may not apply.

2 Comments | Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

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