I live with multiple chronic illnesses, including Psoriatic Arthritis, Ankylosing Spondylitis, Short Bowel Syndrome, Myotonic Dystrophy Type 2, and Sjogren’s Disease. I’m also a cancer survivor living with significant radiation damage.
None of these go into remission. There isn’t a cure.
There are treatments, but every treatment comes with trade-offs. Some treatments help one condition while making another worse. Sometimes I have to choose which problem to address, knowing something else will flare as a result.
Recovery from overexertion, or even common illnesses like a cold or the flu is slow. What might take someone else can fend off in a few days can take me weeks or even months, and sometimes even involves hospitalization.
Day to day, my life is very unpredictable. I still have some good days, some very hard ones, and everything in between. There are days when my body simply won’t cooperate, no matter how careful I’ve been or how much I want it to.
Because of that, I hesitate to make plans. It’s easier not to get my hopes up than to cancel at the last minute. When I do disappear for a while or go quiet, it usually means I’m dealing with more pain or fatigue than I can push through.
A lot of everyday things take more effort than people realize. Showering, driving, grocery shopping, cooking, eating, even walking can be too much some days.
Eating is especially complicated. With Short Bowel Syndrome, I can’t tolerate most fast food, restaurant food, or convenience meals. Spices, oils, sauces, fresh fruits and vegetables, most dairy, seafood, and shellfish are all off the table. I eat a very small range of foods, often the same meals every day, and even then, my GI system doesn’t always cooperate.
Socially, things have changed too. I don’t always answer honestly when people ask how I’m doing. It’s not because I’m trying to be dishonest. It’s because most of the time, the real answer doesn’t fit into a casual conversation, and I’d rather talk about something else.
I miss a lot of my old life. Teaching wasn’t just a job for me, it was my vocation. I miss it. I miss my hobbies, like embroidery, needlepoint, crafting, gardening, and taking day trips. I miss going to performances, the symphony, musicals, craft fairs, and home and garden shows.
Accessibility plays a role in that. Stairs, steep inclines, and venues that aren’t set up for people with mobility challenges make many places difficult or impossible for me to navigate. Not always being able to drive adds another layer.
Most of the time, my world is much smaller now. While others are working, traveling, going out, and meeting up with friends, I’m often at home or at medical appointments. Over time, those differences create a gap. Conversations get harder because our day-to-day lives don’t overlap the way they used to.
I do try to make the best of things. But I’m also realistic about the limits. I’ve spent a long time trying to push past them or work around them, and it doesn’t always work. At some point, constantly trying and falling short takes its toll.
So now, I focus more on managing what is, instead of chasing what used to be.
What’s been harder to come to terms with is how much my life now revolves around my illnesses. It’s not how I see myself, and it’s not how I want to be defined, but it’s there in almost every decision I make.
I used to be the person who stepped in to help, even for people I didn’t know. I put a lot of time and energy into making a difference for my students and being part of my community. That mattered to me.
Now, more often than not, I’m the one who needs help.
That shift isn’t easy. Asking for help doesn’t come naturally to me, and sometimes I don’t ask at all. At the same time, when no one offers and I truly can’t do something on my own, I’m left trying to figure out what comes next.
It’s a strange place to be, needing support while still not quite knowing how to live in that role.
Being chronically ill isn’t something I chose. It’s a lifelong reality I’m still learning how to live with, one day at a time.
by Jan Mariet 5/3/2026