Brain fog with chronic illness is not a myth and should be taken seriously
To manage it, I reduce decision making, simplify tasks, and create routines
Have you ever felt like your brain just won’t cooperate? Like you’re wading through thick sludge trying to think clearly? You’re not imagining it, and you’re definitely not alone.
As someone living with ANCA-associated vasculitis, I’ve heard multiple doctors say that brain fog isn’t part of this disease. But I respectfully disagree. And if you’re a fellow patient like me, I think you might, too.
On the rough days with brain fog, thinking hurts. It’s not just mental fatigue, it feels like my brain is trying to move through molasses. Forming thoughts, making decisions, and even stringing together simple ideas feels nearly impossible. It’s unlike any exhaustion I’ve ever known.
I’ve always prided myself on common sense and good decision making. Lately, though, I’ve made choices that surprise even me. That’s when I began to realize that this might be something more than just being tired.
The invisible symptoms
If you live with a chronic illness like vasculitis, you probably already know that the most difficult symptoms are often the ones no one talks about. Fatigue, malaise, and brain fog are some of the hardest for me. They don’t show up in lab results. There’s no prescription drug that fixes them. But they’re real and can be life-altering.
One recent experience really brought this home. My mom tried calling and texting me, but I didn’t respond. When we finally talked, she was teary-eyed and worried. In my mind, I had just seen her, but it had actually been four days. That realization shook me.
So, together, we came up with a plan: She would use a simple code word in texts when something is urgent. It might sound small, but having that clarity helps me manage communication on days when my brain just won’t cooperate.
That conversation helped me see how setting boundaries can even help the people who love me. My wife now understands that when my brain isn’t working well, I can’t be expected to function normally. That understanding reduces the pressure on both of us.
Reducing decision making, simplifying tasks, and creating predictable routines may not fix brain fog, but they definitely help to manage it. It turns out that boundaries aren’t about shutting people out; they’re about making space for healing.
One of the cruelest parts of vasculitis is that you can look and sound perfectly healthy, even when you’re not. For me, this is a new challenge. I’m learning to be more direct, honest, and open about what I need. Saying “I can’t do this right now” doesn’t come naturally to me, but it’s become a vital part of coping.
I still hear some doctors say brain fog isn’t part of our disease, but one of my doctors — someone who really listens — told me that it’s actually quite common with chronic inflammatory conditions. They don’t fully understand why it happens, and there’s no specific treatment. But just hearing that acknowledgment felt like a weight was lifted off my shoulders. Sometimes validation is the most powerful medicine.
Brain fog might not be visible, measurable, or easy to treat, but it’s very real. Whether it’s creating communication systems, simplifying daily decisions, or just allowing ourselves to rest, what we do to manage it matters.
If you’ve found strategies that help to cope with brain fog, I’d love to hear about them. The more we share, the more we can support one another. Please share in the comments below.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
About the Author
Angela Mckee
I have been sent to the memory clinic thinking I have Alzheimer’s or vascular dementia but all the time I’ve been saying it’s to do with my c-Anca vasculitis. One day hopefully in the not so distant future the doctors will realise that it’s actually a debilitating symptom.
Sarah Jones
Angela, I totally agree and relate! I hope some day! I have started to evaluate if a doctor is a good fit by whether or not they take this seriously. Just sayin'.
Cheryl N
I sometimes compare brain fog to being underwater. It feels like an abnormal state of mind where your senses are altered and your normal responses are not reliable. Thoughts can be fleeting, and so concentration and focus are difficult. Thinking or doing work in sequence (like following directions or a recipe) requires a ridiculous amount of effort for the reading and multiple rereadings required.
I, too, try to simplify, write everything down, proofread EVERYTHING that I write and double check myself constantly.
Has anyone tried Prevagen or something like it?
Sarah Jones
Great comparison. My neurologist said Prevagen will not help. Not sure about other experience. I am with you, I have put strategies in place that have helped manage it. Oh and my cooking is awful - you are right - recipes just overwhelm me!
Natalie Sirota
Sarah, thank you so much for this wonderful article. I do not have ANCA, but do suffer from other diseases that are both known to cause brain fog and other's that exacerbate brain fog (Lyme diisease, Ehler's Danlos, Mast Cell Activation, Long COVID, and Hereditary Angioedema). I would love to learn more about your work with Hospital Emergency Advocacy for rare disease!
Stacey Ferguson
One of the best ways I have found to deal with brain fog . That is to drink more water and go ahead and fold . Lay down catch a nap. I have had Anca associated vasculitis for 4 years now . So I understand the challenges. Sometimes the brain fog will co inside with blurry vision also.
Sarah Jones
I love that - go ahead and fold! YES. Rest is the only thing that helps! Thanks for sharing Stacey!