When you can’t eat part one: The facts

When I was in the hospital last September a lot of people there were very curious about the whole not eating thing and I got a lot of questions about it…my favourite/the most ridiculous being, “but have you ever tried eating anything?” I decided to blog about this topic, and I even asked if any of you had any questions about it over on my Facebook page, and then no post ever appeared.

Here’s the thing. It’s not that I forgot, it’s that when I started writing there was just SO much to say and I had a really hard time concisely explaining it all. But what better time than Feeding Tube Awareness Week to finally put into words what it’s like not being able to eat. Because there’s so much to say, I’m doing this in two parts.

Up first? The facts.

Disclaimer: this is just my point of view. I can’t speak for anyone else because every person experiences and reacts to things in their own way.

Alright. So, I have gastroparesis secondary to Ehlers-Danlos Syndrome. Without getting into too much detail, partly because it’s not all that exciting and partly because science doesn’t even know all the ins and outs yet, faulty connective tissue impairs my digestive tract’s ability to function properly and so my stomach and intestines don’t move food along efficiently.

Question: Are you allowed to eat?

Yes. There is nothing or no one physically stopping me from eating. I can swallow safely (though pills do have a tendency to get stuck in my throat and start to disintegrate there…ouch) and my doctors encourage me to eat when I can to maintain as much gut function as possible. However, the consequences of eating can be brutal.

Question: What happens when you eat?

Bad things. Next question…

Hah, no but in all seriousness bad things happen when I eat. Nausea is my biggest battle in life. I am constantly nauseated to some degree, but add eating and drinking to the mix, even small amounts, and my nausea gets kicked up a notch or two…or fifty. I have four different nausea medications on hand, but they don’t work miracles, they just take the edge off.

I get full very quickly. Just taking a couple of pills can make me full. The technical name for this is early satiety. And I don’t mean wow-that-was-a-satisfying-dinner-but-now-I-don’t-want-to-eat-anymore full, I mean I-can’t-believe-I-ate-all-that-what-was-I-thinking-wow-I-feel-so-so-sick-now full. In addition to the nausea, this early satiety comes with a lot of other symptoms such as bloating, abdominal pain, gas and reflux. I have a lot of chest and throat pain from reflux, and it’s not very lady-in-waiting-like of me but I love burping. Ew, right? Yeah well, let me tell you, when you’re so full and uncomfortable to the point of gagging and crying, relieving some of that pressure is magical. Keep in mind that because my stomach empties slowly these symptoms can stick around for hours.

Question: So what do you eat then?

Not much. Saltines. I can usually eat two or three saltines a day. I can drink maybe 100 to 200 mL of fluid day? Maybe. And not all in one sitting because that would be bad news bears.

IMG_9801

Lifesaver rolls in bulk. Thanks Amazon.

It takes me an entire day to drink that much, and a lot of that is just from taking meds. I also eat a small amount of fruit sorbet, a spoonful or two several times a week. We buy it from the gelato place near my house so it’s delicious but I do have to be careful as most of the flavors I like cause reflux. And then I can eat a few orange tic tacs, lifesavers or jolly ranchers here and there. Not exactly a good-for-the-teeth diet, but I work really hard to compensate for this and luckily I have a very understanding dentist who doesn’t shame me for eating candy.

Besides a tiny taste of things now and again, that’s basically all I eat. And even those things give me symptoms, sometimes really terrible symptoms, but not eating anything at all is also terrible, just in a different way, so it’s a balance.

Question: Do you feel hungry?

I don’t really get hungry, no. That growling stomach? Those hunger pangs? Those rarely happen to me anymore. I’m not an expert on the physiology of hunger and digestion, but I know that while part of hunger and satiety comes from stretch receptors and signals throughout the GI tract, part of it comes from levels of nutrients in the bloodstream. Because I’m still getting all the nutrients I need from my TPN, my body has no physiological need for food, which is what hunger is. Once in a while I will feel a small sensation of, “I think I’d like some food please,” from my stomach but when that happens it’s usually a trick! As soon as I feed it my stomach says, “Oh hold up I’m remembering that I actually don’t like food…sorry.” Sometimes I also experience that I-feel-nauseous-but-I-think-it’s-because-I-need-to-eat feeling. Also a trick.

Fun fact: my friend Leah and I frequently text each other “GTAF” which stands for Got Tricked Ate Food. It happens often enough that we have shorthand for it.

Question: Do you feel full?

Yes! I feel full pretty much all the time. Sometimes it’s just that I feel no need to eat, and sometimes I feel like I just ate even though I didn’t. And then of course when I do eat or drink anything, as I already described, that feeling of fullness reaches a miserable level.

Question: Do you get cravings?

Yes. Oh my goodness, yes! I just talked about hunger and fullness, but another pivotal player here is appetite, which is the desire to eat. I find appetite incredibly fascinating because even when I’m nauseated I still sometimes find myself wanting food despite the fact that it almost always ends badly. Oh and here’s another little fun fact for you. PMS cravings? Real. 100% real. Ladies, take it from someone who can’t eat and doesn’t even like chocolate that much, that chocolate craving you cannot ignore is legitimate.

IMG_1526 (1)

Shhhh. Hoping no one catches me browsing the fridge.

When it comes to resisting food cravings, I find placement is key. If I open the fridge and see grapes (my all-time favourite food) front and centre then I am going to have a hard time resisting them, however if they are buried in the crisper then they’re easier to ignore. Ease of access is another important factor. If I have to take a lid off of a container or rearrange things in the cupboard to get to something then I’m less likely to make the effort. As well, the longer it takes for me to get to a food, the more time I have for reason and self-control to kick in. Sometimes, though, I straight up have to get my mom to hide food from me. Like pretzels. I will probably still go looking for them but luckily she is very inventive when it comes to hiding spots.

Okay now, brace yourselves or skip to the end, because the last thing I’m going to talk about here is poop. Not mine specifically! Yikes. Just in general.

Question: Do you still poop?

You have no idea how many times I have been asked this question! If my life were a drinking game I would take a shot (do a shot?…have a shot?…drink a shot?…can you tell I’ve been sick the entire time I’ve been legal?) every time someone awkwardly asked me this question while trying not to be awkward. Here are some variations: So um, if you don’t eat anything, do you uh…? If your stomach doesn’t empty properly how do you, well, you know…? I know you’re not really putting anything into you sooo does um, does anything, um, come out of you?

This question honestly doesn’t bother me because let’s face it, if I wasn’t living it I would be curious, too! The answer is yes. Even when you don’t eat your body still produces and secretes digestive juices into your GI tract and not everything gets reabsorbed. Your body also uses your GI tract to get rid of other wastes such as bacteria and old cell components. So yup, there is still some stuff to get rid of. The reality for those of us with chronic GI disorders is that we spend way more time than we would like thinking and talking about poop, to the point that we lose all concept of TMI, but for the sake of the rest of you, I’ll just leave it here!

And there you have it. Those are some of the facts about my life without food. Tomorrow I’ll be back with part two: the feelings.

Stay tuned!

 

 

 

Faces of invisible illness

Life with chronic illness has changed so much because of the internet. Between blogs, Facebook groups and hashtags, you can always find someone facing the same challenges as you and feeling the same jumble of emotions. It might sound really strange to a lot of you, but some of my closest friends I have never actually seen face to face. Many of them I don’t even know what their voices sound like! When you live out in the real world and are able to go to school, maintain a job and go out with friends, your friends live out in the real world with you. But when all of that slips away and you find yourself seeing your doctors more often than your peers, a lot of your friends start to live in your computer.

One of my favourite people in this world lives in my phone and my computer. Okay, she actually lives in Pennsylvania, but within the realm of our friendship, she lives in my phone and my computer. We’re less than a year apart, we’re in very similar health situations, we led very similar pre-sick lives and most importantly, we get each other. Normally, I would now show you a picture of us together, but we’ve never met! At least not yet.

Day to day, Leah and I crack a lot of jokes, use a lot of sarcasm, and share a lot of memes and cute polar bear videos to help us deal with everything, but we also help each other acknowledge and accept our situations. Earlier this year we were having a late night conversation about the realities of being young and living with chronic illness when Leah said, “Hey, we should turn this into a free verse poem,” and I said, “Okay!”

Then this happened.

And then we decided to take it one step further. A few weeks ago I suggested that we re-share this piece for Invisible Illness Awareness Week, which, by the way, is happening right now. She said, “Yeah! Why don’t we make a video and see if we can get some other illness bloggers involved?” and once again I said, “Okay!”

Then, after a lot of emails and a lot of cooperation from a lot of awesome people, this happened.

When we first published this piece all those months ago, it was really intimidating! We usually try to keep things light. We tend to downplay how hard it can be. We like to end things on a positive note. But these words? These words are blunt. These words are stripped down. These words are real.

Keeping things light, finding the positive, and focusing on gratitude? That’s still real, too. It’s not all one or the other, and part of how we cope with our chronic conditions is acknowledging both sides. Since we can’t expect anyone else to understand that scarier side unless we talk about, that’s what we decided to do. We decided to share the faces and voices behind our words. And we decided to invite some of our friends and/or favourite chronic illness bloggers to help us.

A huge thank you to everyone who helped us out with this project! We know it was out of a lot of your comfort zones (it was out of our comfort zones, too!) but we so appreciate you taking the risk anyway.

And a huge thank you to all of you who took a few minutes to watch this video! You are giving us a voice and that is one of the most meaningful things you can do. That is one of the most important ways you can help us. We didn’t create this video for pity; we simply just want to be heard. So thank you for listening.

Before I go, meet the awesome ladies (in order of appearance) who put themselves out there and helped us make this happen!

Catherine…pretty sure you know where to find me!

Leah Holstein

Katie Brook

Amanda Bryant

Sarah Frison

Sarah Rush

Samantha Brink

Stephanie Torres

Lisa Tschetter

Chanel White

Michaela Shelley


We don’t like to hear that we look good. Here’s why

It’s not a secret that people with chronic and invisible illnesses get really tired of hearing they look good. You might think this irritation is irrational and that’s okay, because six years ago I probably would have felt the same way. I mean really, who doesn’t like to get a compliment?

But it’s not the spontaneous and genuine compliments that get to me. It’s when someone tells me I look good after hearing that I’m having a really rough time of it, as if looking good is going to make up for the fact that my body is falling apart. It’s when I’m honest about my health, only to be met with a brief but awkward silence followed by a platitude about my appearance.

Well, you look good anyway…but you don’t look sick…and various other forms of that sentiment are on every “things not to say to someone with a chronic illness” list. So it’s not a secret that we don’t like to hear it. The secret is why. I can’t speak for everyone, but I also know I’m not alone in this.

The simple answer is that just because we look good doesn’t mean we feel good.

When we feel awful and someone tells us we look good it makes us feel like our struggle is being minimized. It’s not that we’re mad people think we look good, it’s that we’re worried people won’t understand we are still sick. If someone thinks we look good we assume they think we feel good, too. So we feel invalidated.

We have a love hate relationship with the fact that our illnesses are invisible. It’s nice to be able to blend in, and it’s nice to be able to be selective about who we share it with, but sometimes it makes it harder to accept that things are different. When we look in the mirror we see the same person we always were. We see these bodies that used to dance, run, work, sing, cook, whatever, and then it’s a letdown when we remember that we can’t do those things anymore. So we feel disappointed.

Not only can we not do the things we want to do, but our bodies don’t even do all of the everyday things they are supposed to do. Digesting? My body doesn’t really do that. Standing up? Yeah, not a fan of that, either. It seems like our bodies are always letting us down. So we feel betrayed.

All around us we see all these people doing these everyday things without thinking twice while we’re just struggling to stay on our feet (figuratively, yes, but often very literally, too!). Because we didn’t understand that struggle ourselves until our own illnesses hit, we know that unless other people are touched by illness they can’t fully understand that while we look fine on the outside, on the inside we are falling apart at the seams. So we feel isolated.

And since we look fine it’s also hard for other people to comprehend our limitations. Even if they do comprehend them, not being able to see those limitations make it easy for other people to forget they exist. We often have to provide multiple explanations or reminders and then we worry about being a downer and holding other people back. So we feel guilty.

Sometimes looking good or healthy can even be an obstacle to getting proper treatment. Most of us have worried at one point or another that we don’t look sick enough to be taken seriously. So we feel defensive. All of us have had doctors question our symptoms based on our appearance, and tell us that our problems are all in our heads. All of us have been treated as hypochondriacs, and after going weeks, months or even years without answers we start to wonder ourselves if we’re just going crazy. So we feel doubtful, too.

And here’s one of the biggest things that we don’t talk about: We feel insecure.

When we become sick our body is no longer entirely our own. For one, we have a lot of doctors wanting to know about a lot of things that we’re not always comfortable talking about. And two, we lose a lot of control over how we look. We feel like we’re too skinny because we haven’t been able to eat lately. We’re unhappy with how much weight we’ve gained since starting a new medication. We don’t like how puffy our face is due to fluid retention. We’re frustrated by the acne that’s showed up because our hormones are out of balance. We’re exasperated by the dark circles under our eyes that won’t go away no matter how much we seem to sleep. We are acutely aware of all the ways that our illnesses and treatments have altered our appearance and when someone tells us we look good it’s easy to start thinking about all the ways in which we don’t. It’s hard to feel comfortable in our own skin when it doesn’t feel like our own skin. So we feel self-conscious.

We know that when you tell us we look good it’s because you’re trying to be supportive, or you don’t know what to say but you want to be encouraging, or maybe you really do think we look good and you want to make us feel good about ourselves. And we know that it seems silly for us to resent a compliment so much.

But it’s more than just irrational irritation. Invalidation, disappointment, betrayal, isolation, guilt, defensiveness, doubt and insecurity. All of that is tied up in our appearance.

So thank you for trying to be supportive, but if we open up to you about how we feel please don’t default to how we look. Listen and try to understand. Acknowledge the things you can’t see, the inside stuff. The resilience, the patience, the determination and the hope.

Encourage us from the inside out, because at the end of the day, appearance aside, that is what keeps us going.