Sharing My Story on World IBD Day
As someone who works in film, I know full well that every good story has a beginning, middle, and end. The thing is, though, that every chronic illness has a beginning but never an end. There is no clear-cut, 3-act structure for me to present this story to you. I will live the rest of my life in the middle— in this messy, painful, awful, beautiful, roller coaster ride that is the middle. So how, then, do I talk about this?
My thoughts inevitably turn to social media. There, I can take my time crafting the narrative, hide behind the post, and conveniently not have to look anyone in the eye while doing so. But as I look at my own Facebook and Instagram, I am painfully aware that I, like so many others, are using these platforms as my highlight reel. I may not be blatantly lying, but withholding this central aspect of my life from everyone in it feels just as false. On the other hand, each one of us is inundated day after day with posts like this, about innumerable causes we should care about, not to mention everything going on in our own lives and those of our friends, families, and coworkers. And oh, we can’t forget those incessant news alerts casually warning us about the threat of nuclear war far more often than I’m sure any of us are comfortable with.
So why should I even post anything? Why does this matter? The truth is, in the context I’ve just presented, it doesn’t— and I know that. I am so acutely aware of that fact that it’s taken me years to write this. But now, approaching 8 years of living with a chronic illness, I realized that I have to talk about it. I can’t expect anyone to care or be empathetic if they do not understand. Anyone with a chronic illness knows the golden rule: you have to be an advocate for yourself. So today on World IBD Day, on behalf of myself and the five million others around the world who share my disease, it’s time to advocate.
I was diagnosed with ulcerative colitis in 2010 when I was 16 years old. Ulcerative colitis, along with Crohn’s disease, is a form of inflammatory bowel disease, or IBD. Like fraternal twins, they are similar in many ways but have a few key differences. While Crohn’s disease can affect anywhere in the digestive tract from the mouth to the anus (Yes! I said anus! If you’re uncomfortable with that word then strap in, honey, or X out now), ulcerative colitis affects only the colon, otherwise known as the large intestine. IBD is an autoimmune disease, where the immune system attacks healthy digestive organs for reasons not fully understood.
There is no known cause of IBD, and there is no known cure. For some, the cause is genetic, but for others like me, there is no explanation. Some of the most common symptoms of IBD are abdominal pain, diarrhea, intestinal and rectal bleeding, urgency, fatigue, and weight loss. However, I want to be very clear on three things:
1. It is different for everybody.
2. I don’t mean to be blunt, but you do not know what it’s like to have IBD.
3. Its effects go so far beyond the symptoms I just listed.
1. Unless you understand these three points, I will never be able to comfortably talk about my disease with you. So let’s get the first thing out of the way: this disease can be different for everybody, in every single way. A diet, lifestyle change, medication, or surgery that works for one person, could wreak absolute havoc on another. I spent 9 months on a medication that spiraled me deeper into a flare, while that same medication has saved lives. As soon as I step into humidity, it feels like I’ve been poisoned, whereas others’ symptoms are exacerbated by the cold. Two people with the same disease can have a wildly different set of symptoms. Like everything in this world, nothing about this is black and white. So if you know someone else with IBD, their experience may not equate to that of another. In some cases, it’s like comparing apples and oranges— you shouldn’t do it, even if they are both fruits.
2. As much as I deeply empathize with others having gastrointestinal issues, (and believe me, no one figuratively or literally feels your pain more than I do) I need you to know that just because you’ve had the stomach flu or even a tough time after a Chipotle burrito, does not mean that you know what it feels like to have IBD.
3. At this point, my cursor has been blinking at me for several minutes, silently counting the amount of time I’ve been staring at the screen trying to figure out how to articulate what it does feel like to have IBD. This leads to my third point, that the effects of my disease are so entrenched in everything I do that at this point, it even feels integral to who I am as a person. I feel like a tree that’s grown around the rusty piece of junk set in front of it; you cannot separate the two. For the sake of awareness on World IBD Day and my own transparency with my family and friends from whom I’ve been hiding for far too long, I’ll give this a try.
Thinking back to the beginning of my story only further highlights why we need more awareness for IBD. I always thought awareness was such a strange concept because to me that just meant acknowledging the existence of something. However, I challenge everyone reading this today to think of awareness in the context of its second definition: “Awareness: concern about and well-informed interest in a particular situation or development.” If we think about it in this way, then what we all need is a little more understanding in order to be well-informed, and hopefully then, more compassionate and empathetic towards those of us living with this disease.
I first started experiencing symptoms when I was 16 years old as a sophomore in high school. You’ll hear a lot of us with IBD start our stories this way, because it often takes months if not years to get a diagnosis, and due to the nature of our disease and the awful social stigma that comes with it, many of us suffer in silence for too long before seeking help. The TLDR (too long; didn’t read) version is this: I, naturally, lost far too much weight, which led to my family, the kids at school, and even the doctor who I went to see to believe that I had an eating disorder. Despite telling the doctor that I was, in fact, eating and was also pooping blood and mucus (You see?! This is why it’s hard to talk about this!), she handed me pamphlets on eating disorders, prescribed more fiber, and that was that for 6 more months.
So I (again, naturally) got much worse, and my parents, who fortunately for me are both nurses, stepped in to save the day. I found an amazing GI doctor, and on September 28, 2010, had my first colonoscopy. After waking up from the anesthesia, the first thing I heard the doctor say was, “Well, Michael, you aren’t crazy,” before handing me the photos of my colon, red and swollen with inflammation and littered with ulcers. Now, you might think that that should be a scary moment, but the only thing I remember feeling was overwhelming relief. Finally, after months of suffering, shame, doctors, and tests, I had tangible proof that I wasn’t crazy and that what I was experiencing was valid.
Due to this relief, it wasn’t until I was wheeled out to the car that the gravity of the diagnosis started to sink in. I just remember thinking, “My life has changed forever,” and being aware of the fact that I had no idea what that meant. If I’m being honest, the next year and a half is a blur for me. I’m not sure if that’s a fortunate or unfortunate byproduct of being as sick as I was, but I do know there was a lot of pain, doctor’s appointments, tests, procedures, tried and failed medications, side effects, diets, missed days of school, falling asleep in class, slipping grades, a diminished social life, a heavier burden on my family, and an emotional fallout that, of course, was taking place at the same time that my family was going through other difficult struggles completely unrelated to my illness. Simply put, it was a lot.
At 16, I had to come to terms with so many things that I never expected. I will probably need surgery one day. If my disease continues to worsen, there’s a chance that I’ll have a colostomy bag connected to me for a while or even for the rest of my life. If that’s the case, some women who undergo these surgeries are unable to have children. Because of my disease, I have a much higher risk of colon cancer. Because of my immunosuppressant medications, I have a higher risk of a rare and aggressive form of lymphoma, not to mention the slew of other complications that come with a compromised immune system, of which I’ve already had many.
You know those stupid little pieces of skin you get on the side of your fingernails? When I get them, they can easily become infected, and once it was so bad that more than half of my nails subsequently fell off. I’ve had gastritis, pancreatitis, cellulitis, kidney infections, a still-unsolved liver mystery, and this isn’t even counting the side effects of the 15+ medications that I’ve tried. This list would read exactly like the “side effects may include” portion of those medication commercials, where every healthy person watching wonders whether the medication is even worth it (it is). This is actually too much to get into so if you’re at all curious, I implore you to Google the full list of prednisone side effects alone. Just a few side effects may include: being an absolute raging PSYCHO (the roid rage is real, y’all), what we affectionately call “moonface,” when fat disproportionately builds up around your face (to accentuate that brand new facial hair that’s coming in!), insomnia, anxiety, weakened bone density (hello stress fractures from walking!)… the list literally goes on.
A year and a half after my diagnosis, I started an immunosuppressant medication called Remicade, which ended up giving me my life back for close to 4 years. Remicade is typically given as an infusion every 6-8 weeks, but I had to get it every 4. The common theme of my disease is that, while not the most severe (luckily have not had surgery yet!), I just don’t respond to medication well and so the diseased portions of my colon are incredibly hard to treat. This drug thankfully got me through college and enabled me to live an almost normal life for that time. However, once I graduated, I knew that it wasn’t normal to receive this dangerous medication at the highest dosage, twice as often as FDA recommended, and to still have active disease, so I opted to start the trial and error journey of finding a new medication. This decision led to a two-year-long struggle that I believe and hope I am just now starting to crawl out of. However, I don’t regret it; it’s simply the reality of living with IBD, but I would be lying if I said it was easy.
With less active disease in my colon thanks to the Remicade, it was worth seeing if I would respond to a less aggressive medication, so my doctor and I started at the bottom and worked our way back up. During this time, I got a job in New York City and moved here to begin my new life and career just as my health began to deteriorate once more. The difficulties of moving to the largest city in the country completely alone is another post in itself, but trying to do that, begin my career, impress (or at the very least satisfy) my new employers, make friends, and build a life while really struggling with a disease that no one understands was a challenge that I had yet to face.
One of the toughest aspects of IBD is the fact that it is an invisible illness. When people look at me, they have no idea that I’m sick. So that + lack of IBD awareness + a grueling flare = a nightmare. You can’t go to a new employer and say, “I have IBD, I’m actually in a pretty severe flare-up right now, and I need to come in late these days for doctor’s appointments, and stay home on days when it gets really bad,” because no one knows what that means. They take one look at me and see a healthy, capable, young person, being overdramatic or worse, lazy. But really, this is what it means when it “gets bad”:
It means that I’ve been up all night, whether with insomnia or anxiety from a medication, or in serious pain, making multiple trips to the bathroom throughout the night, or all of the above. Because of this, I will sleep until the last possible second, probably snoozing my alarm a few times. I wake up more exhausted than the usual level of fatigued that I feel every day and immediately head to the bathroom. Because I snoozed the alarm, I only have a small amount of time left to get ready, but IBD will throw a wrench in those plans too, because you can never account for how long you will be in the bathroom. The morning is always the hardest part of the day, and I could be on the toilet easily for up to 30 minutes. Now I’m late, I look horrible because I don’t have time to get ready, and I try to throw together an acceptable office outfit that isn’t form-fitting and won’t cause further discomfort for my belly. I need to drink coffee because I’m so exhausted, but I know that it’s going to decimate my stomach. Eating is a chore that I must complete in order to stay alive, despite knowing the damage it will undoubtedly cause. I get to work, I put on a brave face, and I fake it all day. You have no idea when I am in pain because I have years of experience hiding it. I work my @$$ off to make up for my multiple long trips to the bathroom, which I’m praying you don’t notice but you inevitably do. Usually, jokes are made, which are great when they come from your close friends and family who understand, and hurtful at best from people who don’t. I finish work, commute the hour home, and am completely out of spoons for the day (if you are unfamiliar with the spoon theory, please do your chronically ill and/or disabled friends a favor and read this). The cycle starts over.
Being out of spoons, or out of energy for the day, means that I have to say no to everything. I can’t make new friends or keep up with old ones because I simply don’t have the energy to do anything after work, and the weekends are spent recovering from the work week, grocery shopping, and prepping my paleo meals for the week that I eat in an attempt to keep my symptoms under control. I make up excuse after excuse since no one wants to hear “I’m just too sick for this right now,” over and over again, until eventually people just stop trying. As young twenty-somethings in New York City, everyone is going out and drinking, dancing, or brunching. No one is going to commute on the subway for an hour to sit with you doing your 4-hour infusion, or sit on the couch for hours watching Netflix with a new friend they barely know. Even hanging out in Central Park, which may seem like a compromise, is out of the question. I simply cannot sit or walk around in the sun, for an indeterminate amount of time, without direct access to a bathroom. This depressing, isolating reality of IBD brings me to my final and, in my opinion, most important point.
Perhaps the most significant extraintestinal impact of this illness is the mental and emotional effect it can have. This is purposely last on my list because it has, admittedly, been the hardest to come to terms with and even more difficult to talk about. The stigma surrounding the embarrassing nature of IBD is extremely hard, but the stigma surrounding mental health is somehow even harder. When you spend months alone in a new city, away from your family, friends, and significant other, living every day exhausted and in chronic pain with no relief and no hope of relief, it’s no wonder that your mental health will begin to deteriorate, too.
People living with IBD to some degree live with an underlying sense of anxiety, even if they don’t feel it all the time. We never know when our health will take a turn, if we will develop antibodies to our medication, if we’ll suffer some kind of medical emergency like a bowel obstruction. We never know when the urgency will hit and we have to get to a bathroom right NOW, and if we will make it. Sometimes, we don’t. When we do, we’re wondering: Does everyone notice that I’m gone? Does it smell in here? Is there any universe in which I could ask to go home right now? We never know if you understand, if you’re judging us, if you’re just being our friend or hanging out with us out of pity, if you’re tired of hearing us talk about it. When I say no to a friend, are they still going to want to be my friend? Should I be honest with them, or will that drive them further away? I feel alone and overwhelmed, but if I reach out to my family or my significant other, will I worry them? Will they be upset because I am? I’ve had them under the impression that I could handle this for years. They’re hundreds of miles away. What could they do anyway? You’ll just make them feel awful for not being able to help, so you better not. The cycle of isolation continues.
Isolation, exhaustion, anxiety, and pain, of course, lead to depression. For me, depression is game over. I don’t even want to be with people when I’m depressed. My brain is all fog, and I have an even harder time trying to articulate what I’m going through. I feel embarrassed, ashamed, weak, and angry at myself for somehow allowing things to get to this point, and angry at my circumstances for causing this. I don’t want anyone to see me this way, because it isn’t me. I trudge through each day on autopilot, hoping that the next will be better. Again, I feel like I can’t reach out to anyone, because at this point, how can I possibly explain how I got here? Would they even understand or care if I do?
Finally, hopefully, something gives. For me, that was switching to Humira coupled with Imuran in December of 2017 (which really became March of 2018 because of a health insurance war, which, again, needs to be an entirely separate post). Humira is a subcutaneous injection typically self-administered biweekly, but you know by now that ya girl’s gotta take it weekly. Humira has actually been my greatest medication challenge thus far (to describe it as anything less than stabbing yourself with a wasp stinger that burns like hell would be sugarcoating), and it has not by any means been perfect, but it has allowed me to regain some of my old life back. That, plus medical marijuana which helps me sleep through the night, has allowed me to get some much needed, restorative rest. Now, I’m able to wake up hours before work to fit in some yoga and meditation, which helps both my physical and mental symptoms. I go to an IBD support group every month. I finally have the mental and emotional capacity to talk more openly about my disease, because I realized that I have to in order to heal. I just booked my first appointment with a therapist. I’m even writing this post.
I’m writing this not to draw sympathy or attention, but to hopefully facilitate some understanding and awareness of just part of one person’s experience living with IBD. There is so much that was left out of this already severely long post; to fit it all would just be impossible. This is simply my truth and my reality, which because no one outside my closest circle knows, means that no one outside of that really knows me. I think World IBD Day is the perfect excuse to try to raise a little bit of awareness and empathy in those of you who may not have known the depth of this disease.
It is my hope that one day, saying, “I have IBD,” means that a person won’t get fired for taking sick days or asking to work from home, that a store owner would immediately lead you to their bathroom when you are desperate and crying instead of saying they don’t have one (then where do the employees go, HUH?!), that a friend would know to check in with you with an occasional “How are you feeling?” text every now and then, that saying, “I have IBD,” wouldn’t be followed up by “What’s that?” and wouldn’t feel like an embarrassing and painful secret to share.
While I did focus on the embarrassing and painful aspects of IBD for this post, that’s not to say that this disease hasn’t brought about some truly beautiful things. Now, when I think back to that moment when I realized my life had changed forever, I know that I was right. Yes, I may face more challenges than I had previously expected. Yes, I will be popping pills and be stabbed by needles on a constant basis for the rest of my life. But I am not exaggerating or being cheesy when I say that this disease brings you the deepest, most genuine gratitude for the simplest joys of life.
Now, when I feel healthy enough to spend a day just sitting in the park, I am ecstatic. I treasure my relationships with my family and every close friend who knows all of this about me and not only chooses to stick around, but happily makes the accommodations I sometimes need (like buying a drink in a random bar so that I can run to the customers-only bathroom, or making an entirely gluten-free Thanksgiving dinner for me). I know that one day when I say the vows “in sickness and in health,” that my partner will mean it, because we’ve already lived it. I don’t walk through life expecting 50 years worth of health and plenty of time to accomplish the things I want to do. Every day I am aware that I could get irrevocably ill tomorrow, so I book the trip. I travel the world, and my eyes fill with tears when I gaze upon its beauty. Because despite everything I may have to deal with in my day to day life, I know in my (albeit less dense 😉 bones how fortunate I am for the health that I do have, for the ability to do these kinds of incredible things, and for the people that have supported me throughout it all. And that, I think, is something we could all use a little more awareness of.