On Toilet Humor and Chronic Illness
Ask me “How are you?” and I’ll respond with a number from the Bristol stool chart
Pictured: White text on blue background with abstract pink design. “Bodies aren’t perfect; but that doesn’t make them less worthy.”
By Iris Aguilar
Advisory note: In this essay, the writer talks about dealing with ulcerative colitis, a chronic disease, which primarily affects the digestive tract. You may want to skip this piece if this is a sensitive topic for you; there are graphic details about bodily functions you may find discomforting. We offer a gentle reminder that this article is written as a personal narrative and should in no way be consulted for advice on medical or mental health issues.
Before you keep reading I must warn you this is kind of a body horror story. I have a chronic autoimmune disorder known as ulcerative colitis (UC) that primarily attacks the colon. Not only is it completely unglamorous — some days my life revolves around my bowel movements — it also comes with a vast array of random symptoms and associated diseases that are not always visible in plain sight.
Like many patients with UC, I have some pet names for my conditions, but the most accurate in my opinion is The Gift That Keeps on Giving. Most days I’m fine, but other days I feel like I’m slowly decomposing. You know how sometimes all your electrical appliances stop working within the same week or your car seems to fail for months in a row? Well, that’s basically me with my body.
For the longest time I thought I had irritable bowel syndrome (IBS) or some sort of food sensitivity. A couple of years ago my health declined considerably. I found myself constantly running to the bathroom while dealing with some hardcore intestinal pain. I was also starting my first year as a postdoctoral researcher so I thought maybe all the coffee, endless work days and stress had something to do with it. Whatever it was, it had control of my life.
I was afraid to eat. I was consistently late to work because I couldn’t leave the house (diarrhea was worse in the morning). If I had to run some errands, I would stop eating three to four hours prior. I was terrified of being stuck in traffic or away from a bathroom. I started skipping celebrations because I was afraid to eat at restaurants with just one bathroom. My life revolved around my bowel movements and I was in constant pain. On top of everything I kept getting these stubborn corneal ulcers that were incredibly painful and annoying (sometimes I couldn’t look at my computer screen), my knees and elbows hurt, and I was involuntarily losing weight.
I allowed myself to go through the negative emotions without getting stuck in self pity or full catastrophe mode. Toxic positive thinking is not good for me either. If I can’t accept my feelings, then how can I cope with the realities of a body that has turned against me?
When I went to visit my parents in the summer, everyone got worried because apparently I looked pretty ill. I was urged to go see a gastroenterologist because my condition didn’t look like your run-of-the-mill IBS (IBS and inflammatory bowel disease have overlapping symptoms). Part of me knew something was wrong, so I put it off for a few weeks, but eventually I gathered the courage to get an appointment. As part of the initial assessment, the doctor went down a list of gastrointestinal symptoms and then he asked whether I had problems with my eyes. I was confused, but said that, yes, I had seen two different specialists about my recurring corneal ulcers. His face changed as he took notes and my heart sank. I just knew this wouldn’t be as simple as an infection or IBS. I had to get some bloodwork and provide stool samples (I know, totally unglamorous). The wait was definitely daunting.
A few days later my results came in. Almost everything looked normal but there was hidden blood in my stool. That, along with some blood work results and my symptoms, meant it was time for the dreaded colonoscopy. I must admit that the worst thing about getting one is actually the prep. You can't eat anything for a day, you have to drink gallons of this horrible tasting liquid and get stuck in the bathroom for hours. My procedure was scheduled for the morning, so by the time I had to go to the hospital I was hangry, dehydrated, and sleep deprived.
My boyfriend drove me to the hospital, which was kind of a mad race because that horrible colonoscopy prep worked really well and we had to make an emergency stop where I begged a waitress to let me use the restaurant’s bathroom. I was given deep sedation so the only thing I remember is counting back from 10 to 8 or 7. When I woke up there was a very likely diagnosis: ulcerative colitis. I just needed confirmation from some biopsied samples.
As expected, the diagnosis was confirmed when the biopsy results came back. At first I was relieved to finally know what was wrong with me and get the right medication. But then, like many patients with chronic diseases, I was struck by the fact that it will never go away. UC is a chronic disease and a very unpredictable one.
When newly diagnosed, I was in a terrible emotional state. Apparently you can experience grief over your health. I remember bursting into tears after reading about someone who needed a colectomy at the age of 31 (I was that age at the time). Even though I have a mild form of UC so far, I’m always haunted by the unknown. I might cruise through the rest of my life with a mild version and my intestine intact. I may get a severe flare up that sends me to the hospital. I might need to wear an ostomy bag. I can't know what will happen next.
As someone who loves finding answers, dealing with this kind of uncertainty is sometimes frustrating because there is no specific cause for this disease, and there isn't a cure either. You just have cycles of activity and remission and you take medication that helps you get into remission or control a flare up. I take medication every day and will probably do so for the rest of my life. I most certainly won't die from this, but my life is kind of subject to the whims of my immune system.
Take my last flare for example. Autoimmune conditions don’t usually show up alone, so while my intestine is crap (no pun intended), so are my joints. I spent nearly two years happily taking a maintenance dose of a drug known as mesalazine that is on the lower step in the treatment plan; it is relatively cheap with minimal side effects. Then on New Year's Eve 2020, I had some discomfort in one of my finger joints. In a few days that discomfort evolved into horribly painful sausage-looking fingers (the medical term is dactylitis) that took over different fingers, along with pain in my elbow and shoulder.
At first, a single shot of steroids did the trick and my life was back to “normal”, but later the joint issues came back with a vengeance. Most of my fingers were stiff after waking up. I had what I called “the monster hand” because most fingers in my right hand were swollen and deformed. One day I experienced sudden pain that made it impossible for me to grasp my cell phone. I must admit that at that moment I knew my good streak had finished.
It was time to step it up with my medication. I was prescribed steroids and immunosuppressants. I was told that if this strategy didn’t work I would need biologics. Biologic drugs are incredibly expensive (about $550 USD per dose). I cried. I cried because I thought biologics would never be on the table with my mild UC. I cried because I lost both my private insurance and access to social security benefits when I was furloughed, and even if I paid for an insurance plan out of pocket, it would NEVER cover complications associated with this disease (in Mexico, where I live, health insurance companies can deny coverage of pre-existing conditions). I cried because there was a shortage of the immunosuppressant I needed and I couldn’t find it anywhere. I also cried because the medication I was prescribed has several side effects.
I was irrationally afraid of steroids because the most common side effects are trouble sleeping, mood swings, rapid weight gain and moonface. It felt like the steroids would be taking away my sense of agency because at that point I was comforted by the idea that I could control my moods and the way I looked. I felt completely hopeless, even though I had (and still have) a strong support system.
I knew some people with the same disease had it worse. But did that cancel out the panic of getting new, scary symptoms and medication while unemployed? Over time I accepted this new “reality” and took small steps to overcome my hopelessness and regain some sense of control. It wasn’t easy, but I had gone to therapy a couple of years earlier when I was first diagnosed with UC, so this time I was equipped with an “emotional toolbox” and I allowed myself to go through the negative emotions without getting stuck in self pity or full catastrophe mode. Toxic positive thinking — bordering on denial — is not good for me either. If I can’t accept my feelings, then how can I cope with the realities of a body that has turned against me?
I talk about my symptoms in grisly detail because I think it gives visibility to the disease. Externalizing how I feel when I experience weird symptoms helps me accept them.
The easiest thing I can do is to diligently take my medication and vitamin supplementation (I have several reminders on my phone so I don’t forget). However, I try to stay on top of new information regarding my disease because there are still many unknowns. I try to eat less processed foods, but I don’t have a super restrictive diet because I love food and diet restrictions make me sad. I did have to quit coffee because it aggravated my symptoms, and I sure miss it, but green tea has been a decent replacement.
In order to have a more complete management of my disease I also try to exercise four to five times a week without punishing myself if I need to rest for a few days or even take week-long breaks. At first I tried yoga, but I’m not much of a spiritual person so it never felt right. Then there was running, but instead of an endorphin rush I just got skin rashes and incredibly bored (I loathe the treadmill). Running outside makes me feel anxious because of the lack of bathrooms, plus living in a city with inclement weather, subpar pedestrian infrastructure, and the constant threat of encountering some kind of violence, it’s just a bad combination for me. I’ve found that strength training works great for me. I just steer clear of stressful competitive styles and most fitness influencers. I feel that in my case, this type of exercise makes me “connect” with my body and stay in the moment, since I need to be really focused on form and cues like “engaging my lats” to avoid injuries. It's also a great way to manage bone density issues. More importantly, it helps me be aware of my body and listen to it in a way that is not related to disease symptoms. The plus? There’s always a bathroom nearby.
Have you been recently diagnosed with a chronic disease? Here are some of the things that have worked for me so far:
If you can afford it, go to therapy. These diseases are life-long, so the sooner you learn to deal with the emotional complications the better. I didn’t even know I was depressed before my first session, go figure. It’s also really important if you are not used to advocating for yourself, setting boundaries, or asking for help.
Talk about it. I talk about poop all the time. An inside joke with my family is that I respond to “How are you?” with a number from the Bristol stool scale. I talk about my symptoms in grisly detail because I think it gives visibility to the disease. Externalizing how I feel when I experience weird symptoms helps me accept them. I’ve also learned that most people with “decent” health are totally oblivious to some diseases, but they are willing to listen and learn. And you know what? Bodies aren’t perfect; sometimes they’re strange and “gross,” but that doesn’t make them less worthy.
If you have the energy, money, time and your body cooperates, don’t just take the medication and call it a day. Work with a nutrition specialist, try any sort of physical activity — it doesn’t have to be strenuous — and maybe practice meditation and mindfulness. Whatever works for you. An integrative approach can be beneficial for some diseases, but be aware of the fact that the fitness and wellness industries can be plagued with fatphobia, classism, and racism and tend to promote overconsumption. My focus when it comes to exercise is on connecting with my body, learning to take up space (you deserve to be there!) and ignore the numbers (e.g. the scale, clothing size, personal records).
Educate yourself but be wary of misinformation. If a product or treatment sounds too good to be true (all benefits, no effort) it’s probably a scam. Education can be a great way to advocate for yourself, especially if you feel like your doctor or loved ones are gaslighting you when it comes to how YOU feel.
Join a support group. I’m in two Facebook groups. I find it pretty rewarding, and I especially enjoy guiding recently diagnosed people. In one of these groups, people actually donate their surplus medication and supplies to other members in need.
Find what helps you feel like you're taking control of your life and your body. I was a volunteer for a clinical trial. I had to take days off work and travel, but I had the resources, so I just jumped the gun and did it. When my rheumatologist mentioned that he was giving a talk to gastroenterologists about the connection between UC and some joint disorders I told him that if it was useful, he could use my case as an example and granted him permission to use photos of my hand before and after treatment.
I try to exercise as much as I can (but without the pressure of becoming a before-and-after poster child). You might try expressing yourself through art, taking care of a living being (I adopted one of my cats when I was dealing with my diagnosis), or working on a DIY project.
Join campaigns to raise awareness of your disease and donate or do some volunteer work.
Try to prepare for the worst case scenario. What would happen if you lose your insurance? Do you have a financial safety net? Do you have a strong support system? What would happen if you get fired because of your disease? Are you aware of your rights as a worker or employment laws?
I know the goal is always achieving remission, but don’t feel like a failure if you find yourself having a flare.
Do you have a friend/loved one with a chronic disease? Here’s how not to be jerk:
If your friend is complaining, just listen. Offer your ears or time, but don't start listing possible solutions you saw somewhere. We’ve read A LOT and have seen several medical specialists. Most times we just need to vent.
Don’t go on and start suggesting some magic diet that will “get us cured.” I’ve heard some really contradicting ones: going vegan, going “carnivore”, paleo, keto, high carb... you get where I’m going with this. Systemic chronic diseases are difficult to understand and, so far, cannot be cured, just controlled. Nutrition is important, but some of us still need medication. Don’t shame us for needing that. Would you tell someone with insulin-dependent diabetes to go off their insulin and do keto instead?
If you are determined to comment or ask your friend about a recent physical change (e.g. sudden weight loss or gain, skin changes) be really mindful about the way to address it. Chronic and autoimmune diseases, as well as the medications used to manage them can cause physical changes that make us feel self-conscious, and not everyone is in the right place to talk about it directly. For example, one of my toenails keeps splitting right in the middle (there´s been blood) so I don’t wear sandals for now, and I experienced water retention when I was on a higher dose of corticosteroids.
Don’t get mad if your chronically ill friend skips a celebration or attends but doesn't eat, drink, or dance. Some medications have alcohol as a contraindication. Sometimes we don’t know if a new food or hidden ingredient may send us running to the bathroom. Traveling can be really complicated. Sometimes we are in constant pain. For some people, getting up and doing the most basic things can be extremely difficult. But don’t worry, we still care about you. Just try to be open and accommodating.
Try to skip invasive questions about our “love life” or reproductive choices. Some people find it difficult to be in a relationship while dealing with chronic conditions. Extreme fatigue is common, and some chronic and autoimmune diseases have a genetic component, so we might be worried about having children. Some of us take teratogenic medication or might have complications affecting our ability to conceive. Finally, understand that we may be under significant financial pressure because being chronically ill is expensive.
Pictured: A spot-on depiction of how you may inadvertently be a jerk to a loved one that has been diagnosed with a chronic illness. Image reproduced with permission from Krista Murias (@kristamurias).
I think that so far I’ve found the right balance between acknowledging the disease and the limitations — some temporary, some permanent — it imposes over my body while just living my life. I’m definitely in tune with my body and I’m ready to listen when something seems to be wrong, but I don’t obsess over every little thing. It has also pushed me into setting boundaries without feeling guilty, especially at work, which had been a problem for years. I know an extremely demanding, high-profile career with lots of travel might not be on the table anymore, but maybe I’m better this way. I exercise pretty consistently, but I know I won’t hit magical personal records or become an amazon warrior (although I feel like one sometimes). I’m not afraid of getting older or the changes age might bring, since I feel like I’m already experiencing a sort of unpredictable decay (yes, I’m being dramatic but that’s how I feel sometimes when I get new symptoms). It’s kind of liberating.
Editor: Phoebe Bates | Designer/Illustrator: Emma Geddes | Copy Editor: Katie Frankowicz | Communication/Support/Outreach: Meg Chellew
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