Having a Chronic Illness Sucks and It Never Stops Sucking
My life with Crohn’s Disease
Having a chronic illness sucks. It sucked when I was first diagnosed as a college freshman, and it sucks today as a 34-year-old woman. It sucks every single day and it will never stop sucking, and that’s just the truth.
When I was 18, I was diagnosed with Crohn’s Disease, an incurable inflammatory bowel disease that can cause any number of symptoms from cramping to bloating to pain to nausea to fatigue, diarrhea, bloody stool… (the list goes on). It’s not going to kill me, but it’s not going to go away either. For me, it’s like having food poisoning every single day. Except instead of getting to lie on the bathroom floor, I have to go to work.
Over the last 16 years, I’ve been on 30+ medications, tried at least 10 naturopathic or experimental treatments, been hospitalized upwards of 15 times, and had 7 major surgeries. I even had my colon removed! Did you know you could live without a colon? Good news: you can!
At my heaviest, I weighed about 140 pounds, and I’ve gotten as low as 80 due to malabsorption and dehydration. These days I’m holding steady around 100 and I am constantly, though unsuccessfully, trying to put on more pounds. In my family we call this the “sick diet,” and no, I don’t recommend it to anyone.
I go to the bathroom (you know, like… “go to the bathroom”) 8–10 times per day (this is down from 16–20, thanks to a great new medication). These are almost entirely liquid: I haven’t had a “formed” bowel movement in over 13 years. Have you ever entered a public restroom stall only to discover that someone has left behind a surprise unflushed friend for you? How’d it make you feel? Disgusted? Nauseated? Offended? Well when I spy a glimpse of a stranger’s girthy turd, I feel nostalgia.
I’ve had episodes of incontinence all over the place! In bed, on the subway, at the post office, in the car. You name a place? Chances are I’ve shit my pants there. Once, during a period in which I had an ileostomy, the bag exploded down the outside front of my pants while I was crossing in front of a group of touring college hopefuls. You’re welcome, Dartmouth!
I’m not secretive about my condition, but as you can imagine, all this stuff is hard to share in casual conversation. I don’t presume to have the worst condition ever, or the wisest words about it, but I think we should try to talk about this stuff, even if it is hard.
It’s hard to explain how mourning the loss of your healthy body is not dissimilar to the process of mourning a loved one, except you constantly have people (doctors, friends, medical ads) telling you you can get better — spoiler alert: you can’t — so the stages of grief just keep resetting over and over. It’s hard to explain how having a chronic illness has made me both more compassionate to those who are ill but also harsher and more impatient with them. It’s hard to explain that at literally every moment of every day, whether that’s at work or out with friends or in the throes of passion, I am in some level of discomfort, and would be better served by lying down and resting.
Mostly, it’s hard to convey the scope of a chronic illness. It isn’t something I can neatly timebox to deal with when and where I choose. I can’t tell it I’m having a hellish week at work, or that I’m still trying to get to know this guy so could it please just hold off a few short weeks. I don’t get a break, and honestly, neither do the people in my life. A list of symptoms tells one part of the story, but it’s more than that — it’s about how my disease affects every single aspect of my life. Here are just a few you won’t read about on WebMD:
1. Food & Drink
Have you ever noticed that 90% of social activities revolve around eating and drinking? “Let’s grab coffee.” “Can I buy you a drink?” “What do you mean you can’t eat this birthday cake that I BAKED FOR YOU FROM SCRATCH WITH MY BARE RAGGED HANDS!??” It isn’t just about not being able to eat certain things, it’s the anxiety that comes along with eating anything. I don’t always know what will send me straight to the bathroom or worse, to the hospital, and so eating is a fraught experience for me. There’s not much getting around this one, because we all gotta eat to survive, but eating isn’t always fun or easy so I appreciate the occasional non-food-related date.
Work can be awesome but it’s also exhausting. You may have seen a string of recently published articles about “burnout” which causes even the healthiest people to grow physically and mentally ill due to increasing professional demands and an inability to meet them.
For me, work is both more exhausting and more crucial.
Having a chronic medical condition in the United States means that I need full-time employment in order to get good health insurance. For some context, a weekly dose of just one of my medications costs $5,000 without insurance (that’s $260,000 a year). It also takes more out of me to do the same level of work as the average healthy person. This means I often have to choose between my career and my health and 90% of the time I choose my career.
When I started my first job, my father, a career coach, warned me to never let coworkers know I had an illness. “It’s none of their business,” he said. “And you don’t want to be seen as sick.” He’s right, unfortunately. When people see you as sick they see you as less capable. And while there are laws in place to protect outright discrimination, unconscious bias is a powerful thing.
The problem is: I am sick. It doesn’t make me any less smart, creative, committed, or productive. In some ways, I’d argue it’s made me better at all those than your average HP (Healthy Person) because I need to be more judicious with my time and energy. But it does mean I get tired, I’m often distracted by pain, nausea, or an imminent need to fulfill one of my 8–10 bathroom visits, and I’m generally more fearful of losing employment because it has greater ramifications for me than it would for your average HP.
Work is not only hard, of course. It’s also fulfilling, it’s fun, it’s stimulating, it helps me feel mentally engaged and socially connected. But…it’s complicated. You may be sensing a theme.
Maintaining friendships is a challenge for me. I work a lot, I’ve moved around, many of my friends have either left New York or had babies (new tiny friends!). But I’d be remiss if I didn’t mention my illness and the toll it has taken on my social life.
Being sick all the time means I cancel plans…a lot. And everyone knows that canceling plans is objectively bad.
In college, my friends called me “flaky” and “unreliable” because I often had to leave parties early or skip them entirely. One friend yelled at me for 10 minutes because I had to back out of driving my improv group to a festival in order to seek medical treatment for the hundreds of tiny, bleeding ulcers that were lining my colon. Some of my dearest friends accused me of exaggerating or “faking” my illness (to this day, I often need to remind myself that I’m not faking being sick, I am in fact faking being well). And these friends are not, and were not, bad people: we were 18-year-olds. I wasn’t the best at communicating my needs, and my friends weren’t the best at hearing them.
In my early 20’s I tried a new tactic so as not to be perceived as flaky: lying. I once canceled a first date by lying about breaking my foot, but then felt obligated to reschedule, so I showed up the following night with a borrowed air cast and faking a limp. At times I would be so racked with guilt when faced with canceling that I wouldn’t get in touch at all and would no-show. This was [understandably] frustrating to people, and even my most supportive friends eventually lost patience with me.
I had friends call me “selfish,” “melodramatic,” and “no fun.” That last one always stung the most, because I was already insecure about it. I’ve been a lie-on-the-couch-and-watch-movies-with-my-cat-until-I-pass-out-at-10-pm kind of gal since I was a teenager, which didn’t exactly make me the life of the party. One friend said it would be “unethical” of me to have children (my mother had just been diagnosed with breast cancer, and this was just one familial disease too manyin his opinion).
I do have friends, and great friends at that. But one thing that happens over time is that your friends get used to you being sick. The first few times I had surgery or was hospitalized, the outpouring of support, love, gifts, visits, and calls was enough to make even the bleakest hospital room seem bright. The next time, it waned a bit. Now it’s even less. People just have a limited reserve of social support and care. They can summon a lot of it for an acute episode or hospitalization, and certainly more if they’re a close friend or partner, but there just isn’t enough to go around when it comes to regular, year-after-year support. This is normal, but can still be hard.
To be fair, I also still struggle with how, and how much, to communicate with my friends during these periods. Texting to let them know feels unnecessarily alarmist and/or sympathy-seeking. But it also feels weird to say nothing. I may not need the same level of support I needed after my first major surgery at 21, but surgeries are frightening and emotional. I would still love a care package with themed playing cards and scented eye pillows and a $.99 DVD of Anchorman (even though I couldn’t play it) or a visit with flowers and balloons.
Today, I say no to a lot of things ahead of time (still not as many as I should) and I try to listen to my body if it’s telling me I need to cancel day of. But I hate it. I go to therapy to help process all of my medical complaints and anxieties so that they don’t have to weasel their way into “friend time.” But it still sucks. I find that people in their 30’s are generally more understanding and kind, either because they’ve dealt with their own illness or that of a loved one. I make seeing friends a priority, but I only have so much time between work, relationships, and family.
If “early evening apple juice in the park” ever becomes the norm for social get-togethers, I will kill it in the friend department. But until then, I remain deeply jealous of people with multiple close friends whom they see frequently.
The most complicated place my illness has had an effect is my family. I’ve always been close with my parents, but this has made being sick both easier and more difficult.
On the easier side, my parents have been my biggest, most amazing and involved supporters. They have slept in 8 different styles of uncomfortable not-meant-to-be-slept-in chairs while keeping me company in the hospital. They have gone to bat for me with oblivious doctors and intransigent insurers. Just last week, my mother bathed me in the hospital because I was too weak and in too much pain to bathe myself.
But on the more difficult side of things…last week my 70-year-old mother gave me, a 34-year-old woman, a bath. And this is by no means the first instance of serious regression that’s taken place because of my illness. My being sick not only causes my parents to snap back into protective, anxious, doting parental mode. It also causes me to snap back into a mode in which I want or need to be parented. This is hard because, well, I both want it and don’t.
I want to be taken care of, but I want to feel like an independent, self-sufficient adult. I want my mother to give me her signature foot massages from the foot of my hospital bed, but I don’t want to have to fill my parents in after every single doctor’s appointment. I want to be honest with them when I’m not feeling well but I don’t want to cause them unnecessary worry. It’s the push-and-pull of adolescence 20 years after the fact, and it’s extremely confusing and exhausting for all of us.
What I can say is that it’s definitely brought us closer and pushed us to figure out better, more productive ways of communicating and working together. And I’m so grateful to have their support. When my father had a kidney transplant three years ago, my parents both remarked how helpful I was during his surgery and months-long recovery: staying with him at the hospital; advocating for him with busy doctors; forcing him to drink all the truly-disgusting-but-nutritionally-packed yogurt drinks even when he felt too weak; keeping him distracted with the perfect slate of binge-worthy TV shows (Stranger Things and Jessica Jones, I will forever be in your debt). And my response was simple: I learned from the best.
I am lucky to be with a wonderful, supportive man who sees cheering me up as his purpose in life and who literally watched me shit and vomit blood at the same time and somehow still wants to have sex with me.
But that wasn’t always the case. Dating with a serious digestive condition isn’t fun. I remember feeling jealous of how boys could talk all about their bathroom habits and not lose an ounce of sex appeal, but it didn’t feel the same for me. I feared being perceived as “needy,” which for years seemed like a one-way ticket to being alone for the rest of my life. And rather than seeing my scars as physical reminders of my resilience, I focused on how misshapen they made my stomach.
The funny thing is: I never had a guy tell me I was “too sick” to date, or break up with me because I couldn’t go backpacking with him. Most guys actually thought my scars were cool. The thing I feared constantly — being rejected because of my illness — never happened.
It took me years to realize that most of my anxiety was self-imposed and that I could be both lovable and attractive despite having an illness I thought was “gross” and unappealing. I’m not sure what helped me change that — whether it was age, experience, or just fatigue — but it’s hard to find a meaningful relationship if you’re expecting the person to leave you for farting too loud, so, whatever did it, I’m grateful.
Today, being intimate is still complicated. How sexy do you feel when you have food poisoning? But I’m working on it.
I’m working on a lot of things.
So yeah. That’s life for me. It’s my normal.
I want to acknowledge that I am blessed with an incredible support network, great doctors, a fabulous therapist, the cisgender, white, thin, and economicprivilege of being taken seriously at hospitals and being able to afford good care, as well as a condition that can be invisible (there is much more discrimination against those with visible disabilities).
I guess I just think we should all talk more openly about this stuff. Health problems are common. And if you haven’t had to deal with them yet, you will someday (sorry). Growing up would have been a little easier for me if I hadn’t felt so much pressure to seem “ok.” So now, in my infinite 34-year-old wisdom, I’m trying to be more honest with myself and others about the ways in which I’m notok. And while it still totally sucks (and always will), removing some of that pressure does help.
Now excuse me, I need to go to the bathroom.