woman holding a box of her things after being let go from a job

I've Now Lost Two Jobs Because of My Irritable Bowel Syndrome

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I got fired. I have never been fired before. I was diagnosed with mixed irritable bowel syndrome (IBS-M) only three months ago. I went to the doctor because my job, at the time, was threatening to fire me. So, because I couldn’t control my illness, I decided to leave that job. It felt a bit like I was being pushed out. They said I was welcome to return once I got everything under control. I was making $11.20/hour there working my full-time hours. I was happy with the arrangement.

Since then, I got a job making $9.00/hour, only getting 25 hours a week. I was just fired from this job. I told them about everything when I hired in. I told them and they said it shouldn’t be a problem. So now, for the second time in the three months since I was diagnosed, I am without a job due to my IBS.

 

Why is it you cannot have a chronic illness and be employed? I am a good worker. I even go to work when I am in too much pain, when I should be at home. I only call in when absolutely necessary. So, because of that, I got fired.

I am not even sure what I am supposed to do now. Is it worth looking for another job? Am I going to get fired from that as well? I am at a point where the world seems to be against me. As if dealing with IBS wasn’t a big enough issue, now I have to navigate the employment community. Again.

I feel like I’m drowning. I need to be employed, but how do I do it? I am lost and confused with this. I know there are jobs out there for me. I just need to work hard at finding the right one.

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Thinkstock photo via Wavebreakmedia Ltd.

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How Going Gluten-Free Helped Me as Someone With IBS and Depression

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IBS is a condition with the lovely, explicit name of irritable bowel syndrome. As you can imagine, I prefer IBS. I started experiencing symptoms my freshman year of college. I tried everything under the sun to get rid of the near-constant stomach pain and other, more unflattering symptoms. This included over-the-counter medication, ingesting peppermint oil (known to be soothing to the stomach), going dairy-free, keeping a food log to attempt pinpointing what foods were most problematic, etc. I knew going gluten-free was the diet of choice for many with IBS but was warned against it due to its seemingly highly restrictive nature.

It was not until I read this study that so much began to change. The Alfred Hospital in Melbourne, Australia did not study people with celiac disease, but rather people believed to be gluten-sensitive who were eating gluten-free to alleviate their IBS symptoms. This was critical because I had already been tested for celiac (which came back negative). This study did not find a discontinuation of gastrointestinal issues but what they did discover was that patients were still reporting feeling better. A chance to mentally, even if not physically, feel better? Yes, please!

 

So, for the past six months or so I have been gluten-free. Here are some changes I noticed:

1. Far less frequent stomach aches.

2. Bowel movements that were regular (rather than periods of constipation and periods of diarrhea).

3. An improvement in my thoughts regarding my body (possibly due to a decrease in bloating).

4. Generally elevated mood.

And you know what? It didn’t turn out to be a terribly difficult transition. There are so many gluten-free options out there on the market now and restaurants are becoming more accommodating, sometimes even having a separate, gluten-free menu on hand. So, for those of you who think you may benefit from a gluten-free diet, here are some tidbits you may what to know…

Things to avoid: Anything with wheat barley and/or rye.

What this most typically consists of: Breads, pastas and pastries (and yes, that means pizza too…bummer).

Something you wouldn’t expect gluten to be in, but it is: Soy sauce!

When eating Mexican: Make sure to ask for corn chips and/or corn tortillas. Those are all safe, whereas flour ones are not.

Restaurant suggestions near you: Download Find Me GF in the app store!

Now onto the good part. What brands to seek out for the best tasting gluten-free things!

1. For sandwich bread: Udi’s is my go-to. A good second choice is Rudi’s (especially their loaf made with honey, yum!).

2. For a salty snack: Snyder’s pretzels. Any chips that are corn or potato based are also gluten-free.

3. English muffins: Glutino makes a corn based one that is my English muffin of choice, but there are a few others out there.

4. Cereal: Honey Nut Cheerios, Corn or Rice Chex, and anything by Van’s (Cinnamon Heaven is my favorite!).

5. Crackers: I use live G free for crackers I’m going to top with something, cheese or hummus for example. For more of a snaking cracker, Lance makes peanut butter and cheese-filled ones.

6. Protein bars: Luna, Lara, Quest and Clif.

7. Flour: Bob’s Red Mill makes a number of gluten-free flours. (They also have a pancake/waffle mix,  pizza crust mix and corn bread mix.)

8. Dessert: Duncan Hines has some gluten-free cake mixes – just be sure to check the box because not all of their products are gluten-free. Betty Crocker also makes a number of gluten-free dessert mixes (P.S. the funfetti cake one is great!). Again, just make sure it is labeled as gluten-free. There are also countless brands of pre-made cookies. In my opinion, a ranking of those depends on your preferences (for example, crunchy vs. soft).

If you are living with depression and looking for a different way to deal with it, maybe going gluten-free is for you. If you are dealing with IBS, maybe gluten-free is the right diet for you. If you have both, like me, I can tell you it’s working for me! I do not know if I’ll be committed to a life without gluten for all of my days, but for now I’m very glad I tried this and can’t believe how much better things are. I wish you the best of luck in your health endeavors either way! But if you are thinking gluten-free, don’t think that means missing out on tasty food (trust me).

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Thinkstock photo via Szepy.

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When People Make Jokes About My Invisible Illness

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I’ve felt different all my life. Some cases were very small; I liked bananas while my friends were repulsed by them. Other times, they were large, sticking in my memory like cement. For example, one of my only friends in the seventh grade was my math teacher, Mr. Kovak, who I would walk the track with every day at recess because I had no one else to hang out with. The month I turned green was one of those “big ones,” that I know I will remember until the day I die.

I had just been rushed to the emergency room when my neurologist noticed a spike in my liver enzyme levels. (Yes, by my senior year of high school I had a regular physician, as well as a gastroenterologist, and a neurologist. I would soon add “endocrinologist” and “hepatologist” to that list.) I felt completely fine, but in the days that followed, my blood levels continued to rise as my skin started to change. I felt trapped in my own body, like I was fooling everyone from the outside. I felt fine, like I could go run a marathon if I wanted to, but the outside was deceptive. I looked as if I was going to vomit at any moment. My skin was an ugly shade of chartreuse, and the whites of my eyes grew unrecognizably yellow. I hated looking in a mirror; it scared me. I didn’t want my mind tricking me into thinking I really did feel bad simply based on what I could see of myself.

When I was discharged six days later, my doctors having mapped out a plan of how to get control of my rampant liver, people were shocked when they saw me. I noticed, too. People leaned away from me as they asked, “How are you feeling?” The third night after I had been discharged, my mom and I had plans to make dinner together, just the two of us. The food was almost ready when we realized: We forgot the bread! What good is pasta without more carbs covered in butter and garlic to go along with it? Luckily, the grocery store was less than a mile away, so I jumped in the car to grab some bread as mom put the finishing touches on the pasta. I raced through the store, grabbed the bread, and hurried to the only open cashier in the nearly empty store.

The dark-haired girl murmured the standard, “Find everything OK?” as she took the bread from my hands and scanned it quickly. I don’t even think she recognized my, “Yep. Thanks,” as she hit a few buttons on the cash register before asking, “Credit or debit?”

When she looked up at me, I saw her face visibly change. Suddenly she was fully attentive to my presence, her jaw suddenly fallen open in disbelief, which I only thought that happened in books and poorly produced sitcoms. As I slid my card through the machine, I felt her eyes boring into me. When I looked up and made eye contact again, her brow was now furrowed, mouth still agape. I was now sure that my face was not only a yellowish green, but was now adding some pink as my cheeks began to burn with embarrassment. I snatched the bread and receipt from her, and she continued to stare as I made my way through the door to the parking lot, blinking back hot tears that were dangerously close to spilling over and running down my jaundice cheeks.

I collected myself in the car as I drove the two minutes back home. When I stepped through my garage door, I told my mom what had happened with humor in my voice, joking, “Didn’t her parents teach her not to stare?” There were instances like that night that would soon follow, like my “friend” in my AP government class who switched seats so he wouldn’t have to sit near me and “catch” what I had. I would go home and try to joke away the pain with my parents. But I never let go of those moments.

I was reminded of such moments tonight.

Aside from the couple months when my skin was a different color, I’ve suffered an invisible sickness for as long as I can remember. My stomach and intestines have always given me grief. I’ve suffered through chronic nausea that would leave me asleep on the bathroom floor at two in the morning for countless nights in a row, to endless, painful constipation, cramping, and stomach pain, to mind-boggling, tunnel vision-inducing migraines.

People tend to care less when they can’t see what’s affecting you. When your skin is green, the jaw drop happens more frequently, and people are more willing to bring you gift baskets (shout-out to my senior year drama teacher on that one). But when you are going through a tough bout of constipation that requires you to spend what feels like an endless amount of time in the bathroom, people tend to be less concerned. No one cares how incredibly embarrassing and humiliating it is, especially when your boss calls you out on it, as if it’s something you can control.

People also tend to joke around more with things they can’t see. One of the managers I work with at an upscale Los Angeles restaurant had surgery on her foot a little while ago, that still gives her pretty severe pain. She walks with a limp. People don’t question it when she needs to excuse herself to the office, or requests a stool to be brought to her while she works.

A week and a half ago my abdomen woke me up, screaming in pain. I was vomiting all night. At urgent care the next day, the doctor didn’t know what was wrong. In the coming week I was sent to have an abdominal ultrasound, followed quickly by a CT when the ultrasound didn’t reveal anything unusual. My scans came out clean, but I was still in tremendous pain. I was given pain meds, but the kind that you can’t take during the day because they make you drowsy. So, I was in severe pain, and had to go to work on medication because I needed the money, and the restaurant needed me.

Luckily, my manager with the foot problem understood what it is like to have to work despite your pain, so she brought me a stool to sit on and ordered the servers to help me reset tables. It made a huge difference. Standing only made my pain worse, as if it was stretching the pain throughout the entire right side of my abdomen, instead of keeping it localized to one particular spot. Some servers joked with me, giving me quick back rubs when a manager had their back turned, or asking me if my pancreas was still “aflutter.” Those comments always made me smile; beneath the humor I could tell they cared about my well-being.

There was one joke, though, that left a bad taste in my mouth. It started with someone asking why I was on the stool, as the hostesses of the restaurant typically stand. I explained the short and sweet version that I had some pretty painful abdominal pain, so the manager let me stay seated through my shift.

“That’s a good excuse, I should use that sometime,” was his response, quickly followed by, “Just kidding.”

The words stung, and I winced as he walked away, trying not to let what he said bother me as much as it did. It was a joke, after all, I said to myself as I tried to distract myself with organizing the server cards I had lined up to seat whoever came through the restaurant next.

But it hurt. It still hurts, even though I’m sure he said it flippantly, not meaning anything personal. But, it’s not the first time I’ve gotten a comment like that for something health-related. It’s off-hand responses that come after I’ve been in the bathroom for a long time and someone notices, or when a teacher rolls their eyes because I think I’m going to throw up and have to run to the nurse’s office for the fourth day in a row. I have let words like these beat me down for so much of my life that, at times, I start to wonder whether or not I am not being tough enough, or I’m not in good enough control of my body. That type of psychological welfare can really take a toll on a person.

I wanted to write this to draw attention to the problem. I’m sorry if you’re uncomfortable with my ailments, and maybe disclosing my constipation was too much information for such a public forum (honestly, it’s just poop -we all do it). But please take into consideration the words that you consider saying to someone else about their health that might be seriously affecting them. I know, most of the time, you mean it as a joke. But please, spare me jokes like “that’s a good excuse,” because you’re just making me feel worse. I’m already infinitely more embarrassed than I let on, so please don’t draw attention to it.

Honestly, I’m just so exhausted for apologizing for things I can’t control. The pain I keep silent is so much more than what lies in my abdomen. Please remember that words that you consider funny are sometimes more hurtful than you could ever imagine, especially if you’ve never experienced what it’s like to have a chronic health problem.

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Why I'm No Longer Staying Quiet During IBS Awareness Month

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When my mother was diagnosed with thyroid cancer over 20 years ago, she never really talked about it. She didn’t want to make a big deal of it, didn’t want to worry my grandmother or anyone else. She never even really said the “C” word until years later. She just had “a thing taken care of,” and that was the end of it. Even when we started doing events with the American Cancer Society, she was hesitant to own it for herself, to join with others in the Survivor Lap.

Anyone who knows me (or follows my blog) knows I am not shy when it comes to talking about my illnesses. I’ve written posts about Sarcoidosis Awareness Month, Arthritis Walks and advocacy activities and my involvement with World Autoimmune/Autoinflammatory Arthritis Day. It took a little while to get comfortable with that, to get over the embarrassment and the fear of what other people would think of me. Ultimately, I had to just get over it. These illnesses aren’t my fault – I didn’t do anything to bring them on myself – and if writing about them can help anyone else, then that’s more important anyway.

That said, I’ve still been mostly quiet about one illness/area. Physically, the details are not what anyone wants to think about, so I don’t write about them. Psychologically, I was scarred by my third grade teacher: if any student had to go to the bathroom during the school day, she said we had three minutes; any longer and we would be in trouble (she assumed we must’ve been playing, not actually using the facilities). I was conditioned to have this negative association with an entire system; a natural biological process became synonymous with being bad. Even though I now know how wrong she was, it’s been so deeply ingrained that nearly 35 years later I’m still not comfortable discussing it.

I recently discovered that in addition to Sarcoidosis Awareness Month, April is also IBS Awareness Month. My initial instinct was to just let that pass without a word…but then I thought about why I write about the rest.

The shame and secrecy make it so much worse. Maybe if I’d heard people talk openly about this type of thing when I was younger, it wouldn’t have been as bad for me. Maybe I could have spoken up when I was having problems, rather than waiting until I had to be brought to the emergency room at 8 years old. Maybe I wouldn’t have developed such unhealthy habits that only make a “bad” situation worse. Maybe I wouldn’t have felt so isolated, living with a problem that I couldn’t talk about and even doctors couldn’t easily explain or resolve.

Instead, I grew up with severe abdominal pains that would literally stop me in my tracks. I grew up never knowing what “regular” was, but usually needing a lot more than three minutes. Decades later I’m still dealing with these problems, and despite countless attempts, my doctors have never found a good solution for me.

The debilitating pain that sent me to the emergency room back in third grade was treated as an isolated incident, but I continued to struggle. We tried to address it again when I was in high school. After the most uncomfortable and embarrassing testing imaginable, my doctor diagnosed me with a “spastic colon” – my intestines were literally having spasms, causing the severe cramping and motility problems. Between that and my headaches, his explanation was simple: “stress really does a number on your body.” While I understand and believe in a mind-body connection, this translated in my 15-year-old brain to saying I could have avoided this if I wasn’t so uptight (and how exactly was I supposed to relax anyway, when I was in that level of pain and he was just shoving medical equipment the wrong way up a one-way street??).

We tried a number of different medications, but none really helped. When that doctor was no longer practicing, I saw someone new who couldn’t find anything wrong with me…and when he couldn’t help, I saw someone else. This was a basic cycle that I repeated every few years: I saw a doctor, he made me feel bad about not looking as awful as I felt and eventually I either gave up on him and figured I’d just have to live with the pain or he gave up on me and referred me to a gynecologist instead (now, in fairness, I did have problems in that area also, but the two weren’t mutually exclusive). Then the pain got worse and I tried another doctor…who also didn’t help, and eventually I gave up on him, too.

At some point, what used to be called a “spastic colon” became more commonly known as irritable bowel syndrome, or IBS. I was officially diagnosed with IBS nearly 15 years ago, but the cycle continued just as before. I’ve tried dietary changes, supplements, medications (both prescription and OTC) and alternative therapies, but none have really made a substantial difference yet (I still say “yet,” because I’m not giving up). IBS is something I’ve always had to endure in silence.

bitmoji of woman saying 'shhh...'

When I think about someone else struggling alone in silence though, I have a problem. That’s when I really want to speak up. I don’t want anyone else to feel that they are alone in this. I don’t want anyone else to be too embarrassed to get help, because this is just not the kind of thing we talk about. So as uncomfortable as I am writing this (and as much anxiety as the idea of posting it publicly is giving me), that’s what IBS Awareness Month is about.

So if you are struggling with IBS, or think you may be, here’s what I can offer based on a lifetime of living with it:

1. You are not alone. IBS affects one in five people in the US. Statistically, that means four other kids from my third grade class could have been dealing with this, too. If we could have talked about it back then, we probably would’ve figured out for ourselves how wrong our teacher was to put that kind of pressure on us. We would have known it wasn’t just us, it wasn’t our fault and it wasn’t our dirty little secret to keep for the rest of our lives.

2. There is no normal. Even without any underlying problem, people digest at their own pace, so don’t try to compare yourself to what you think is the “right” frequency. There is no “right” frequency.

3. Trust your gut. Well, your metaphorical gut, anyway. If something doesn’t feel right, get it checked out. If your “pace” or pain level changes and you’re feeling concerned, get it checked out. As uncomfortable as it may be, it is always better to know what’s going on. If something is developing, you can address it before it gets worse. If it’s not, you can save yourself the stress of imagining the worst (which could, in fact, make things worse).

4. It’s OK to talk about it. If you’re not comfortable discussing IBS with people in your life, look to the IBS community. Find a support group, in person or online. There you will find people who understand what you’re going through, who won’t judge you or look at you any differently. The reality is that most people who care about you probably wouldn’t either, but I understand what it’s like to have that fear.

5. Never give up hope. It’s true, there is no cure for IBS and no one-size-fits-all treatment answer, either. But there are options. Even though I’m not a “success story” myself, there are many who have found relief through diet, medication and alternative therapies. And while I won’t hold my breath for it, I still hold on to hope that my time will come. And yours will, too.

This post originally appeared on Float Like a Buttahfly.

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A 'Badass' and Her 'Bad Ass': Finding the Humor in IBS

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My ass has been very bad lately, so I think that qualifies me as a badass. Well, it’s not actually my ass that’s been naughty, it’s the things inside of it. You know.

I hate to even say the names. I never thought I was a prude, but a few years ago, when my ass really started acting up – or should I say acting out – all of a sudden this whole new vocabulary of body parts came into my world.

I’ve had irritable bowel syndrome (IBS) for about 40 years and I rarely told anyone because it had that B-word in it. Now, after all my ass has been through over the past few years, the B-word seems so tame, I could probably write a song about it. If I could write songs, that is. Maybe I’ll try a poem. Here goes:

Inside my ass is my bowel.
That word is not really so foul.
It could be much worse.
I would have to curse,
Had my given name been Colin Powell.

(Sorry, General.)

OK, I won’t quit my day job. But here’s the thing – I did have to quit my day job. Not to write poetry, but because my ass has been acting so shitty. And in order to figure out my ass misbehavior, there have been, shall we say…punishments.

For example, the Balloons and Party Hats test. I think it has another medical-ese name, but I don’t remember it. That happens when your ass highjacks all your brain cells.

How it works is someone in a lab coat sticks a balloon up your ass. Not the balloons the carnival clowns make that they tie up in knots to look like an elephant. Although when it’s in your ass, it feels that big. And, who knows, maybe those lab coat people are just moonlighting? Maybe they’re really clowns or carnies. I mean, what kind of person wants the job to stick balloons up people’s asses?

In fact, when I asked the clowns – I mean, the lab-coated techs – what they say when they’re at a party and someone asks them what they do for a living, I didn’t get a really good answer.

(I really did ask them, by the way. What else do you talk about when someone’s about to put a balloon up your ass?)

Sometimes the carnies – I mean, the techs – fill the ass balloons with water instead of air, so it’s like the water balloons you dropped on people outside your dorm in college from the third floor window. Oh, you didn’t drop water balloons in college? Me neither, but I’ve heard about it.

So anyway, when my ass went in for this punishment, a very nice nurse had me lie on a hospital bed on my left side and face the wall. Which was really kind of her because who wants to face the person who’s putting things up your ass? Then, someone came in to assist her. I couldn’t see this assistant because I was facing the wall, and I don’t know if she wore a lab coat, so maybe she really was a clown or a carnie. I don’t why it took two people to put balloons up my ass. I guess it’s no fun to play without friends.

After the friends were done playing with their water balloons, they started putting other things up my ass, too.

I think they were back there behind me looking around for fun props to use.

“Hey, there’s a stethoscope, let’s try that.” “Oh, what about that landline phone receiver?” “Look! A vase of flowers!”

I don’t think they found an actual party hat, but they should think of adding that to their repertoire because balloons and party hats just seem to go together.

The most amazing thing about all this is that my ass and I survived. I thought I would die of embarrassment or humiliation. I didn’t. I thought I could never look anyone in the eye again because of the blow to my dignity. I have.

It wasn’t fun, but it’s funny.

For me that’s the key. Whatever punishments my ass and I have to endure, I will find the humor in it. I’ve had so many procedures and tests and my nether-regions have been ogled at by so many strangers, I should charge a fee for nude modeling. That very thought is funny, if scary.

These appointments are always a bit of an assault on my modesty, and I have to steel myself every time. But once they’re over – and even in the midst of them – I can’t help but joke about them. In these predicaments, laughter really is the best medicine.

Sometimes, the most embarrassing situations are hilarious when we talk about them. Come clean and get a good laugh. It’s the best salve for my bruised ego.

As for my bad ass, I think I’ll stick with Preparation H.

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The 2 Hard Truths of Irritable Bowel Syndrome

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The first hard truth about irritable bowel syndrome (IBS) is that you have to try and find the humor. Maybe for some people there is none, and maybe I’m only lying to myself to ease the tension. Humor translates well, and although your best friend may be upset that you missed her baby shower, your teacher may be upset that you skipped class, and maybe your spouse is upset that you hogged the bathroom all night, if you can learn to laugh a little, the tension may ease for everyone. “I had a very important date with my toilet. I couldn’t leave, I’m sorry.”

The second hard truth about IBS is an obvious one. Everybody poops. The popular kids in school, the movie stars, your favorite athlete, everybody. You don’t have to talk about it, but don’t let it make you feel ashamed that maybe you just poop a little bit more than others.

I’ve put Tupperware in the car before while having an attack and driving home from work, worried I wouldn’t make it home. It’s at least a little funny, right? Focusing on the lighthearted side of such a dehumanizing disorder has completely turned my life around.

Everybody poops. And I am no less than anybody else.

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Thinkstock photo by Alina Utter

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