Guest post by Lisa Dostmann
Living with a chronic illness, whether an autoimmune condition or a mast cell condition like MCAS, generally means an ongoing up and down in symptom severity, along with the possibility of flares, periods where things get noticeably worse.
Flares, whether rheumatic (lupus, rheumatoid arthritis), related to chronic inflammatory bowel disease, or MCAS and histamine flares, are demanding both physically and mentally. They often come paired with fear about the future, which makes the whole situation even more of a strain. Here are a few tips for coping mentally with flares and setbacks.
1. Stay in the present, even when it's hard
It's completely normal for your thoughts to spiral in these situations. There's often a lot to organize too, doctor's appointments, or in the worst cases, hospital stays and tests.
Alongside prioritizing what actually matters right now, like getting the right support and putting together a game plan, it helps to consciously resist thoughts like: "This is how it's going to be from now on," "I'll keep suffering like this," "What did I do wrong?", and the classic, "Why me?"
Generally, it helps to try eliminating words like "always" and "never again" from your thinking, and stay grounded in the present instead. Objective, factual descriptions of your current state tend to help: "Right now, I'm not able to eat X or do Y." That doesn't mean it has to stay that way forever. It also helps to remind yourself that you've made it through flares before.
2. Ask for help, and bring your circle in
It's common to feel not just helpless yourself, but to notice that the people around you don't quite know how to help either, or how to handle the situation. That can make things harder not just for you, but for the people around you who genuinely want to be there for you.
Putting together a concrete plan for who can do what during a flare genuinely helps. Maybe your partner can handle grocery shopping or take over specific household tasks that are especially hard for you right now. Maybe a friend can drive you to appointments, or just be present with you. (See tip 5 for keeping this from putting too much strain on your relationship.)
Not everyone has strong family support, and for some, a relationship hasn't (yet) managed to accommodate the illness, which can make it harder to build this kind of emergency plan around other people. Still, it's worth staying open to surprises, sometimes neighbors or work acquaintances turn out to be far more helpful than expected. It's worth trying your luck there too. The worst anyone can say is no.
3. Put together an emergency plan
An emergency plan doesn't always have to involve other people, it can also just mean keeping shelf-stable food on hand. Keep your essential medications somewhere accessible too, ideally in a drawer right next to your bed, so you don't have to get up to reach them.
Technology can help fill in a lot of gaps too. Typing, for example, can be genuinely difficult at times, and dictation software can make a real difference there.
Prepare for the possibility of an emergency ahead of time, and if one does happen, try talking yourself through it calmly: you and your body are going to get through this together.
4. Your body is your friend
I know this can feel like a hard thing to believe in certain moments. But your body really is doing its best to support you, even when things aren't running smoothly in some areas, and even when your immune system has turned various antibodies against its own tissue.
Try to focus on what's still working well in your body. Can you breathe comfortably? Can you see or hear well? Is your digestion working okay? And if not, does "not working well" really mean it's not working at all? Quantifying things this way is key. In particularly hard stretches, we tend to fixate much more heavily on the negative.
5. Fight the urge to catastrophize
Psychology has a concept called "state-dependent memory." This means your brain finds it much easier to recall information that was originally learned in a similar physical or mental state. So when you're feeling especially unwell, it becomes much easier to summon up memories and feelings from other times you felt similarly bad. That's not exactly helpful in already stressful moments.
Recognizing this pattern helps: your brain is currently more likely to reach for memories closest to your current state. Try actively redirecting your thoughts toward the positive things that are still happening, or that have happened, despite everything.
6. Keep a journal, and interrupt the rumination
I've written elsewhere about the research behind gratitude journaling. It genuinely protects against depression in the medium and long term, though in the short term, it takes real effort before the new habit sticks. And because of state-dependent memory, noticing good things becomes especially hard during rough patches.
A good approach here is simply writing down the thoughts circling in your head, whatever comes to mind. Getting a thought down on paper can genuinely help interrupt rumination cycles. It also signals something to your brain: "I've written this thought down, I've acknowledged it. You don't need to keep replaying it for me ten more times."
7. Remind yourself of the ups and downs
Life generally doesn't move steadily uphill, and setbacks happen again and again. But there are usually better stretches in between too, ones that are easy to forget in the middle of a flare. It genuinely helps to document good moments for future reference. Actively remembering better times reminds you that you've navigated ups and downs before. And the emphasis is on the ups! 😉
8. Give yourself a distraction
Look for activities you can still manage even in a rough state, ones that bring you joy and pull your focus elsewhere. Small things matter most here: a favorite podcast, or music you associate with good feelings.
Even during hard stretches, it's worth building in dedicated time or a set moment for these things. Enjoyable things need to be planned too. And if you can only manage 10 or 15 minutes before it takes too much out of you, that's completely fine. Listen to your body.
What matters is actually allowing yourself these small breaks, rather than thinking: "It's only ten minutes, it won't really help anyway, so why bother." That kind of thinking robs you of a genuinely positive experience, essentially punishing yourself in the process.
9. Please don't compare yourself to others
Sure, there's always someone who has it better. But the flip side is true too, there's very likely someone out there having a harder time than you. This shows clearly that comparison is the enemy of acceptance, it doesn't ease a difficult situation, it tends to make it worse.
Comparing yourself to your past self, or at least to the version of your past self you remember, isn't helpful either. Comparing yourself to a flare-free or healthier version of yourself is particularly unfair and only drags you down further. Try to interrupt these thought spirals and redirect your attention elsewhere instead.
10. Even more support
One of the most helpful books on this topic is Toni Bernhard's guide to living a good life with, and despite, chronic illness. The author, a former law professor, became so severely ill with CFS/ME that she can barely leave her bed, let alone her house. She describes, in a genuinely moving way, how a comparatively fulfilling life is still possible.
Her book How to Be Sick is also especially valuable, not just for patients themselves, but for the people around them too.
Do you have more tips to add? Feel free to share them in the comments. Thank you!