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.