SECRET SELVES

Here’s What No One Tells You About Chronic Illness

How do you share the loneliness? How do you say that the “get well” cards are nice and all but you’re never going to get better?

Photo Illustration by Lyne Lucien/The Daily Beast

Writing is hard. Writing about chronic illness is impossible.

How do you explain the inner workings of a broken body that society expects (demands) to heal? How do you illustrate pain so extreme it makes you leave your body and crawl on the ceiling — the secret pain that healthy people don’t know exists? How do you resolve your two selves — the one that passes for “normal” and the one that survives, hidden at home and in hospitals? How much of the second self do you reveal to family, friends, strangers? How do you share the loneliness? How do you say that the “get well” cards are nice and all but you’re never going to get better? How does anyone talk about the sacred things that are so deeply part of us?

Four years ago, I was diagnosed with a form of Inflammatory Bowel Disease (IBD) called Crohn’s, as well as celiac disease. Crohn’s — weird spelling because it’s named for the doctor who discovered it — is an immune disease affecting the digestive system. Something happens — researchers still aren’t sure exactly what, but it’s likely a combination of genetics and environment — that makes the immune system attack the digestive system, attempting to push it out of your body.

Imagine trying to give birth to your digestive system, from mouth to asshole, over and over and over again. That’s sort of what Crohn’s is like. Sometimes I tell people to think of the worst food poisoning they’ve ever had, but it comes back unpredictably, forever, no matter how hard they try to control it. Even that doesn’t quite explain it.

Crohn’s can cause internal and external bleeding, digestive tract ulcers, vomiting, diarrhea, malnutrition (because IBD guts can’t absorb nutrients), starvation, intestinal blockages, mouth and throat sores, skin rashes, joint pain, secondary infections, colon cancer, kidney stress, and eye inflammation, among other symptoms. There’s also a growing body of research that gut disease is connected to mental illness, especially anxiety and depression (I have both — hi buddies!).

People often mix up IBD and IBS, which is understandable but frustrating. There’s a lack of education about chronic illness in general, especially the unsexy butt versions. Though IBS can be uncomfortable and life-altering for sufferers, it’s considerably less serious than IBD. IBS doesn’t permanently destroy your intestines, doesn’t cause life-threatening inflammation, won’t increase your chances of cancer, doesn’t cause massive bleeding or malnutrition, and rarely requires medication or surgery.

I’ve been hospitalized more times than I can count. You’d think the hospital would be a safe place for a sick person, but I often get sicker there because of infectious illnesses that thrive in hospitals. The one that keeps trying to kill me is called clostridium difficile, or C. diff for short. It’s a highly contagious, deadly, hard-to-treat bacteria that spreads easily and looooooves compromised intestines (all the nooks and crannies of an ulcerated IBD gut make for a perfect breeding ground). C. diff basically tries to eat you alive from the inside.

I’ve had it three times, and standard treatment — antibiotic therapy — always failed. Instead, I received fecal microbiota therapy (FMT), where the stool of a healthy person was transplanted via colonoscopy into my unhealthy guts. Their good bacteria overtook my bad bacteria, repopulating and balancing the flora. Fecal transplants are highly successful (98 percent in the most recent studies) but not perfect: one of my procedures perforated my colon, leaking all the nasty stuff into my abdominal cavity and causing sepsis. If doctors hadn’t caught it when they did, I’d be dead. Another transplant was done under such emergency circumstances that the hospital had no time to call an anesthesiologist. I was awake and screaming until the assisting nurse couldn’t stand it anymore and shot me full of fentanyl until I passed out. (Thanks, nurse, wherever you are!)

Managing Crohn’s is a confusing hellscape of heavy duty medication including chemotherapy and longterm steroids, home remedies (whatever those are), diet, and stress management (whatever that means). It’s sort of like playing “pin the tail on the donkey,” blinding poking around until you successfully stab your ass with something that sticks. And even then, there’s no guarantee medication will work for any length of time, plus the side effects are often just as bad or worse than the disease itself.

Remicade for instance, the biologic chemotherapy I get every six weeks, can cause lymphoma — a cancer of the lymphatic system. It made my hair fall out and caused excruciating migraines at first; thankfully those side effects have decreased over time. On the flip side, it got me to clinical remission for the first time since my diagnosis (a recent flare and hospitalization ended that but I’m slowly making my way back).

Celiac, on the other hand, is easy to manage by cutting gluten — a paste-like protein found in wheat, barley, and rye — out of the diet. Occasionally I “get glutened” and spend 48 hours with a rash, bad abdominal pain, and diarrhea. That happens rarely now that I mostly cook at home and know where gluten hides (soy sauce, salad dressing, canned soup, processed meat, etc.).

This part — the medical/physical part — of managing my illnesses has become easy over time. It’s systematic. This is when you get a Remicade infusion. This is when you get blood taken. This is what you can and can’t eat. This is how hard you can push your body. This is how much sleep you need. This is when it’s bad enough to go to the ER. This is the script you tell the ER doctors.

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It’s the other parts that are hard.

Cancelling plans because you can’t stop shitting or barfing, but being too embarrassed to tell your friends that’s why you can’t leave the house. Not wanting to explain that you can’t go out to eat because you don’t want to be the asshole who tells the waiter all the stuff you can’t eat, and you can’t go to a bar either because booze tears up your guts. Not even wanting to have friends over in case you have to spend 45 minutes on the toilet, or need to lay on the heating pad the whole time they’re visiting. I’ve cancelled plans so many times now that people just stopped inviting me places — and I don’t blame them. It’s sort of a relief.

You can’t go to work happy hours or chip in on office Seamless orders for the same reasons, so colleagues start to think you’re antisocial. You spend a lot of time in the company bathroom and wonder if your desk-mates Gchat each other about it. “What’s she doing in there?!” You never know how much to reveal about your illnesses to the people you work with; some will be sympathetic and understanding, others will see it as a weakness. Your bosses might be supportive at first, but will grow frustrated over time.

It’s hard to keep telling them that you’re sorry, but you have this thing for life. You will cry in their offices, apologizing for letting them down. You’ll start to have panic attacks about taking another sick day or asking to work from home. You might even quit your job. Interviewing for new jobs is a nightmare because you’re not sure what to tell them: I have this disease and I’ll have to take Fridays off every six weeks for chemo, please don’t be scared, and really, my illness only makes me a more compassionate journalist. Really, I swear. Slowly, you will shrink into an alien version of yourself who can only dream of the human you once were. Will you ever be her again?

You will cry wondering what life would be like without this thing inside you. You’ll have nightmares about getting your colon removed and living with an ostomy bag. You’ll pretend you don’t want kids because the fear of passing on your diseases is too great; the guilt would bury you alive. You’ll be positive and brave on social media; your friends will tell you that you’re an inspiration. Would they say the same if you told them that sometimes you’d rather be dead? That you spend some days holding your breath under the covers? That you feel like you live on another planet — one they can’t come to but you can’t leave? That you’d like to sink into a haze of hospital-provided opiates and never return?

But I’m not dead, and I don’t take painkillers (oh god, how I’d love to). I’m alive and I have two diseases that won’t go ever go away. This is my reality.

This is also my reality: Waking up next to my best friend and four dogs. Sending rocket ships and books about feminist heroes to my niece and nephews. Telling my mom, sister, and closest friends “I love you” every single day. Living as honestly and as thankfully as I can. Scribbling in a daily journal, even if it’s one line that says “today is just okay.” Giving back to people who have it much worse than I do. Lifting my face to the sun and closing my eyes. Enjoying every bite of food I’m able to eat. Whispering to my dead dad and grandparents, updating them on all the things they’re missing. Trying not to worry so much about my appearance or desirability to society. Listening to Michael Jackson’s “Dangerous” album while I fold laundry. Watching people on the sidewalk and imagining happy lives for them. Yelling “hi friend!” out the car window to passing dogs. Trying to understand lives different than my own. Spending $200 on underwear and candles at the Target in Queens. Texting my doctors weekly updates and poop emojis. Mentoring teenage girls. Sifting through smelly old clothes to find vintage gems. Connecting with chronic illness, animal rescue, and LGBTQ communities online. Taking a long, hot shower with all the fancy steps: exfoliating, conditioning, shaving, multiple face washes.

A lot of days, I feel “normal.” A lot of days I don’t. But I’m here. I’m here. I’m here.

This article was reprinted with permission of the author from a post on Medium.com.