5 Things I Wish I’d Known Before My Chronic Illness
New York Times
By Tessa Miller Feburary 18, 2019
Finding out you have a chronic illness — one that will, by definition, never go away — changes things, both for you and those you love.
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.
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.]