How I Handle Flare-Related Guilt And Frustration
In medicine, a "flare" or "flare-up" is a temporary worsening of symptoms of an existing chronic or long-term disease or condition. These episodes can be unpredictable, lasting from hours to weeks, and are often accompanied by increased pain, fatigue, swelling, or other symptoms. Some of those conditions are known as autoimmune conditions, where the immune system begins to react abnormally and starts attacking healthy cells and tissues. These can …
Blah blah blah diet, yadda yadda sleep, exercise, and so on. We’ve all read those articles, yeah?
Now let's talk about Real Life™ and what those articles don’t talk about: Guilt.
Twenty-five, thirty, and even forty-year-old Tess was active. She loved thrifting, swimming, Harleys, dancing, dining out, bicycling, rollerblading, game nights with friends, and going to the mall. Then, one by one, the chronic illnesses moved in and brought luggage. Inflammation, fatigue, and nausea became new and very unwelcome roommates.
When you have a 50/50 chance of having to cancel your plans on the day (the horror), there is, over time, a subtle shift in the dynamic of your relationships. To the outside world, you’re less reliable — and they’re not wrong, even if it’s not your fault. With a chronic illness, even several of them, you generally don’t really “look sick” — and to some people, that translates to “faker”.
“My body betrayed me — not the other way around.”
Chronically ill people like me often feel soul-crushing guilt on the daily. We shouldn’t feel that way; after all, our bodies are betraying us, not the other way around.
CHRONIC ILLNESS WITH A SIDE OF GUILT
The list of things I’ve apologized for out of guilt is truly astounding:
A nutritionist accused me of cheating on a diet because I gained weight while on it. I didn’t cheat; my Hashimoto’s (combined with other illnesses) makes weight loss nearly impossible for me, and she should have known that. But I apologized nonetheless.
I feel guilty about having celiac because restaurants always have to be chosen around my disease, so I often pretend I’m not hungry so the other people can go where they want.
I stopped making plans with people, because “what if” I woke up flaring on the day? I canceled plans with my BFF so many times, she just started expecting it, which gave me ten times more guilt. Easier to stay home.
If I had to miss work, I’d make up the time (unpaid) on my own time, because I felt so guilty about other people picking up my slack. Don’t do this! It cuts into your healing time, making future flares more likely. It also gives your employer permission to abuse your personal time.
Speaking of work, every time I had to call in sick or schedule a day off for testing, I’d ensure I had “proof” to show my boss. Either a note, a co-pay receipt, or an actual copy of the test results — something, anything to show it was real.
To this day, I feel guilty because my husband has to run most of the errands on days/weeks/months I need to be close to a bathroom, and I apologize profusely, even though we’ve been married more than twenty-five years.
“I apologized to everyone — the butcher, the baker, the candlestick maker. It was exhausting.”
Basically, I used to apologize to everyone, everywhere, all the time. It was exhausting. But for me, the worst part was knowing that a lot of the people I was apologizing to didn’t believe me to begin with. I could see it in their eyes.
CHRONIC ILLNESS, CHRONIC FRUSTRATION?
And that’s where frustration kicks in. Chronic illness doesn’t just drain your body. It tests your patience. The moments when frustration hits hardest aren’t always the ones you’d expect.
I broke down and ugly-cried a few weeks ago in my living room. We were supposed to do a big clean of that room, the kind where you move all the furniture around so the carpet can be cleaned. My heart and soul were up to the task, but my body wasn’t. Not even halfway through, my stomach started burning, and the nausea and dizziness set in. My husband, bless his soul, did exactly the right thing. He said, “No worries, I can finish, you just sit there and body-double me.”
And he meant it. He never gets upset when I can’t keep up. I’m sure he feels frustrated, but he never shows it. While that’s generally considered a green flag, it frustrates me to my core that my chronic illnesses make me feel like I’m not an equal partner in our marriage. I can manage my illnesses (sort of), but I can’t make them disappear. Not ever.
When the inflammation is at its worst, my hands are affected. I can’t grip things. I get the dropsies, which is bad news for glassware if I try to wash dishes. It hurts to type and pet my dogs. Fastening clasps on necklaces and earrings is a no-go. Forget about eyeliner unless I feel like risking blindness that day.
There’s more, but you get the idea. I’d like to tell you I’ve learned how to avoid getting frustrated during flares, or when healing from a flare is taking “too long”, but that would be a lie. I still get frustrated — and I’m still working on the best ways to cope.
CHRONIC ILLNESS COPING KIT
mental reframes: changing the story in my head
A mental reframe, or cognitive reframe, is the process of consciously changing the way one views a situation, person, or problem to adopt a more positive, constructive, or neutral perspective. It involves shifting the mental "frame of reference" to re-interpret negative or unhelpful thoughts and emotions, allowing for new understandings and more adaptive behaviors.
I don’t have a “bad gut”. My gut is unhappy. Self-blame is unproductive; framing my gut as unhappy keeps me in a compassionate mindset toward my body.
I remind myself that eating the same safe foods isn’t boring—it’s stabilizing, and it makes me feel good. That reframe keeps me from feeling trapped by my diet; eating foods that make my gut happy allows me to do more of the things I love.
I look at minor flares not as failures but as feedback, which helps me stay curious rather than discouraged. Approaching a flare with a scientific mindset allows me to learn more about how my body works. Why can I eat this food in the morning without flaring, but not in the evening?
boundary setting: drawing the line for my body
Setting boundaries defines our expectations of ourselves and others in different kinds of relationships. So, too, are boundaries important when it comes to our chronic illnesses.
I have clear rules for testing new foods. For example, “wait at least 48 hours before repeating a new test food,” even if the first day goes well. This keeps me from going off the rails. I test each new food three separate times before it gets included as a “provisionally safe” food.
I’ve set gentle limits around timing. For example, finishing dinner by 5–5:30 p.m. and dessert no later than 7 p.m., so I have a digestion window before bed. This boundary has made such a huge difference that it can’t be overstated.
When I feel myself flaring, I immediately return to my Always Safe foods exclusively. This holds the line against temptation so my gut can heal. Depending on the severity of the flare, this can last between 30-90 days.
communication: saying it out loud even when it’s hard
Without good communication — with doctors, loved ones, and especially yourself — finding success will be hard. Don’t do that to yourself.
I handle the shopping, and my husband does the cooking. We both keep printed copies of my safe/test lists. This creates a shared language and eases pressure on both sides.
I’m learning to reframe my guilt. I’ve been reminding myself that my ongoing love and presence matter more than crisis performance. There are (apparently, according to others) things I contribute to relationships above and beyond my physical limitations.
I have a Gut Daily Log that I use to communicate with myself. It contains food and symptoms from day to day, but also my emotional state. I can track trends and see that my emotional healing is part of the bigger picture. When you live with chronic illness(es), your feelings are absolutely part of the healing process.
Telling family and friends about your limitations sucks. But suffering in silence sucks more. You don’t have to go into detail, but it’s okay to tell someone you can’t eat something because it will make you sick. It’s okay to cancel (even on the day) because you’re unwell. I’ve learned the hard way that, in general, most people will be understanding if you give them the chance. And if they aren’t? That says more about them than about you.
Each one of these ten bullet points could be its own blog post. It’s entirely likely that they will be, sometime in the future. Dealing with chronic illness is about so much more than the physical aspect of “eat this and don’t eat that”. I’ve had food trauma so bad that I was literally terrified to eat something outside my Always Safe foods for fear I’d get violently ill again; reframing food tests as “science” and testing in small, controlled portions saved me.
“You can’t control when you flare, but you can control how you respond to flares.”
If you’re reading this and carrying the same guilt or frustration, please know you’re not alone. Your body isn’t the enemy — and you don’t have to apologize for being sick. You can’t control when you flare; what you can control is how you respond. And that, more than anything, is what will give you back a sense of power.
