CreditMark Pernice
Seven Thanksgivings ago, I got sick and I never got better.
What I thought was food poisoning turned out to be Crohn’s disease, a form of inflammatory bowel disease (IBD) that doesn’t have a cure. It fools my immune system into attacking my digestive system, resulting in what I can only describe as the attempted birth of my intestines through my butthole. It’s a cruel and often debilitating disease.
Since that first hospital stay, I’ve had colonoscopies, biopsies, CT scans, X-rays, blood and stool tests, enemas, suppositories, rectal foams, antiemetics, antidiarrheals, antivirals, antibiotics, anti-inflammatories, opiates, steroids, immunoglobulin, biologics and three fecal transplants (if you want to hear a story about my 9-year-old poop donor and a blender, find me on Twitter).
My disease is managed now thanks to an expensive drug called infliximab, but the future is unpredictable. IBD works in patterns of flares and remissions, and little is known about what causes either.
When I was diagnosed, I didn’t know how much my life would change. There’s no conversation about that foggy space between the common cold and terminal cancer, where illness won’t go away but won’t kill you, so none of us know what “chronic illness” means until we’re thrown into being sick forever.
“When an illness that the doctors can’t cure becomes part of our life, all the rules seem to change,” said Paul K. Chafetz, Ph.D., a psychologist in Dallas. “It’s scary in a dozen ways.” I’ve learned countless lessons since the early days of my illness, but here are five I wish I’d known from the start.
The mental part is as hard as the physical part
Chronic illness patients not only face painful physical symptoms, but also mental ones that linger even when the disease is well controlled. “There is trauma related to certain aspects of illness or treatment, and fear of outcomes like death or disability,” said Matt Lundquist, LCSW, a psychotherapist in New York. “For many people, there are financial uncertainties of paying for medical care.” Plus, there’s anxiety over loss of autonomy and control, he said.
Chronic illness also increases the risk of depression, Mr. Chafetz said, citing a 2007 World Health Organization survey that found a higher likelihood of depressive episodes among those with chronic health conditions than without.
A therapist should be considered a crucial part of your care team, just as important as a gastroenterologist or cardiologist. “A provider who has experience working with chronic illness is key,” Mr. Lundquist said. “It’s a population whose mental health struggles can be misunderstood.” If you’re homebound, some mental health professionals will do home visits, Skype or phone appointments, or you can connect with one through apps like TalkSpace and BetterHelp.
[Please note, if you’re feeling helpless or suicidal, the Suicide Prevention Hotline is available 24/7 at 1-800-273-8255. You can find a list of additional resources at SpeakingOfSuicide.com/resources.]
Your relationships change
It’s hard to be a good employee when you need extended time off. It’s hard to be a good friend when you cancel plans last minute. It’s hard to be a good partner or parent when you barely have the energy to get out of bed. No matter how much you try to explain, people expect you to get better already — and when you don’t, they resent you, consciously or not. Some relationships end entirely, casualties of an unfair and misunderstood illness, while others get stronger as you find your true support system.
But most of all, your relationship with yourself changes. You grieve a version of yourself that doesn’t exist anymore, and a future version that looks different than you’d planned.
You might have to give up career goals, hobbies and family plans, learning a “new normal” in their place. “In trauma therapy we call this ‘integration,’ the task of integrating a new reality into one’s life and worldview,” Mr. Lundquist said. “This emotional work can look a lot like grief therapy for a passing loved one.” Try to be patient as you get to know the new version of yourself.
“Having a chronic illness is a series of continuous ups and downs where some things that work for a while won’t and so on,” said Alicia Aiello, president of Girls With Guts, an organization that empowers women with IBD and ostomies. “Be open to this change.”
Everyone offers you advice
People are compelled to offer advice about chronically ill bodies because they’re convinced a fix must exist. Here are a few of the things I’ve been told, unsolicited, to try over the years: yoga, meditation, essential oils, acupuncture, CBD oil, vaping, prayer, bone broth and [fill in the blank with the latest fad] diet. Some of these are great in conjunction with medical treatment — my doctor recommends meditation for stress relief, for example — but the advice is offered as a cure or a better alternative to whatever I’m already doing. And let’s face it, no amount of broth is going to turn off my spazzy immune system.
Chronically ill people research their diseases ad nauseam. They try more treatments than they can count. In many cases, great scientific minds can’t crack a cause or cure. So unless someone asks for your advice, don’t offer it. If you’re on the receiving end of misguided advice, say something like, “I appreciate that you’re trying to help, but my doctors and I think this treatment is best right now” or “There’s no known cure for my disease, but I’d love if you donated toward the research to find one!” You can also educate them by saying, “Thank you, but that wouldn’t help. Here’s how my disease works, and here’s the kind of treatment that’s required.”
You have to educate yourself — and everyone else
Maybe it’s because I’m a journalist, but when I was diagnosed, I dove into research. Learning as much as I could helped me feel a sense of control, so I bought every available IBD book and spent hours reading studies and forums online. I made lists of questions for my doctors and insisted they give me their personal phone numbers. I expected my friends and family to be as gung-ho as I was, but turns out, most of them never even Googled my disease. It was up to me to learn and teach — friends, family, bosses, partners — through conversations, books with passages marked, emails highlighting new research, and social media posts.
There’s a sense of shame that comes with chronic illness that pressures patients into secrecy, making them feel like they can’t discuss their disease outside of the doctor’s office. Secrecy bolsters the lack of public conversation and knowledge, which feeds the shame patients feel. “Let others know what’s going on,” Ms. Aiello said. “People with chronic illnesses withhold information to protect themselves or others, but this can be more hurtful.”
Support is everything
Chronic illness is really lonely.
Loved ones try their best, but your fellow “spoonies,” as they’re affectionately called, intimately know the challenges of forever sickness. Six in 10 Americans live with at least one chronic condition, and thanks to the internet, it’s easier than ever to connect with them in support groups and chronic illness communities.
It took me three years to join an online IBD community. I pridefully thought I could go it alone, but that was like being lost at sea and ignoring a rescue ship. Now, I tell all newly diagnosed folks to join a support group right away — it doesn’t just help you feel less alone, but it connects you with resources and provides a place to ask questions and share stories without shame. The Crohn’s and Colitis Foundation has resources to help you find one. For a sometimes embarrassing “bathroom disease” like IBD, this is especially vital.
Living with chronic illness makes every day a little harder, but it also makes every day a little sweeter. Though I don’t know what my future holds, I’m overwhelmed with a gratitude I didn’t have before my diagnosis — some days I marvel at just being alive.
“The challenge is steep,” Mr. Chafetz said, “but the patient’s mission is to grow into this challenge, create meaning, and be the best person they can be.”
