Brain fog. Forgetfulness. Personality changes. These are among the most unsettling symptoms people with rare diseases can face — and yet, they’re often brushed aside or misunderstood. I’ve watched my wife, Sarah, experience all of these, and I’m here to tell you: they’re real, they matter, and they deserve attention.
Cognitive and personality changes can come from both biological effects on the brain and the emotional toll of living with a difficult, poorly understood condition. For Sarah, it can mean forgetting common words mid-sentence, losing her train of thought, unable to organize her thoughts or track conversations, or feeling unlike herself. For me, it’s been heartbreaking at times to see the person I love — who is sharp, funny, and fierce — suddenly doubt her memory or feel lost in her own mind.
There’s a particular kind of grief that comes with this. For the person living it, it’s the grief of feeling parts of yourself slip away, even temporarily. For those of us who love them, it’s the ache of wanting to help but not knowing how. We’ve both had moments of frustration and sadness — and, honestly, sometimes tears. But naming it, talking about it, and refusing to hide it has been healing for both of us.
If you or someone you love is going through this, please bring it up with your care team — again and again if you have to. Doctors tend to respond to clear, concrete examples, so we’ve learned to track things: “10–12 times a day Sarah forgets simple words like ‘cat’ or ‘fork.’” I jot down small patterns I notice — when she’s most foggy, what triggers it, how it’s affecting her energy or mood. Neuropsych testing can also help make sense of what’s happening and guide next steps.
We’ve built some small systems that help: whiteboards in key rooms, sticky notes on mirrors, consistent daily routines, and voice memos on her phone. We even started using a Plaud device that records conversations and turns them into outlines — a total lifesaver when brain fog hits. AI, in this case, has actually been a wonderful helper.
But more than anything, we’ve learned to give each other grace. Rare disease takes so much, but it doesn’t take away who we are at our core. Sarah is still Sarah — even on the days when her mind feels far away — and I’m still here, loving her through it, learning patience and compassion in new ways.
To anyone walking this path, whether as a patient or a loved one: I see you. I hear you. This is hard, but it’s not hopeless. Talking about it, grieving it, and finding little ways to adapt can bring you closer — to your partner, your family, and to yourself.
Wherever you are in this journey, please take gentle care. You are not alone —we see you, we hear you – because we are you!
