When our debilitating cognitive challenges aren’t acknowledged

Recently, I was talking with friends about navigating life after an accident that left one of them with post-concussive syndrome. Both are, without question, among the smartest people I know — and I’m not being effusive. Yet that single event transformed their lives in ways that feel profoundly familiar to those of us in the ANCA vasculitis community.

In the years since my diagnosis, my wife and I have shared with these friends the challenges I jokingly — but painfully — call my “mini-hippo.” That’s my severely atrophied hippocampus, caused by a rare adverse effect of prolonged hypoxia from one of my vasculitis medications. Vasculitis alone has changed our lives, but at times, the reality of my mini-hippo has felt even more impactful.

We’ve had countless conversations about fatigue, brain fog, and the struggle to adapt to a new normal. Studies suggest that a high percentage of people living with chronic inflammatory or autoimmune diseases have persistent fatigue and cognitive difficulties. Often described as brain fog, it refers to problems with memory, attention, processing speed, and word finding. Despite how common it is, many of us experience it without meaningful validation or support from the healthcare system.

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There may not always be a straightforward “fix” for cognitive changes, but I know this: When a healthcare professional truly acknowledges your experience and responds with genuine empathy, it makes a world of difference. Unfortunately, I haven’t always found that level of understanding in my own experiences, including with neuropsychologists, who should be attuned to cognitive nuances.

Because we don’t fit neatly into a dementia or Alzheimer’s diagnosis, our experiences are often dismissed or misunderstood. Often, we’re reassured that we’re “fine” or “normal.” At worst, we’re accused of not trying hard enough during testing or labeled as “inconsistent” — a subtle way of suggesting we may be exaggerating symptoms. I believe the nuances and complexity of our cognitive struggles are too often overlooked.

We’re not imagining it

One particular bad experience remains fresh in my mind. Since then, I’ve made some important observations:

Cognitive reserve is real. Cognitive reserve refers to the brain’s ability to compensate for damage or dysfunction by using alternative pathways or strategies. People with higher levels of education, complex careers, or strong problem-solving skills often develop greater reserve. This means we can appear “fine” on testing — even when daily life is very different.

Brain fog can show up when cognitive reserve is depleted. When we are tired, inflamed, stressed, or symptomatic — or when we engage in activities that demand attention and processing — that reserve gets used up. That’s when memory lapses, slowed thinking, and decision-making problems become obvious.

Others don’t often see it. Most of us unconsciously save our “spoons” (a popular metaphor for energy levels) for doctor appointments and social interactions. We show up, engage, smile, and perform. The crash comes later — sometimes hours, sometimes days afterward. Neuropsychological testing often captures us at our best, which doesn’t always reflect our day-to-day reality.

Adrenaline changes cognitive performance. Testing environments trigger adrenaline, temporarily boosting cognitive performance. It’s a false reality — one we can’t sustain — but I’m convinced that it absolutely does influence test outcomes. The brain fires on a few more cylinders, masking deficits that are very real in daily life.

Neuropsychological tests are largely designed to identify traditional neurodegenerative diseases. I don’t believe they are designed to capture atypical, fluctuating, inflammation-driven, or medication-related cognitive changes common in vasculitis and other chronic illnesses, including my friend’s post-concussive syndrome.

So if you’ve been told “everything looks normal” while your life feels anything but — please know this: You are not alone, and you are not imagining it.

If I ever must undergo neuropsychological testing again, one thing I’m considering is to show up after my cognitive reserve is already depleted, and without an adrenaline boost, if possible. I believe this may help to paint a more accurate picture.

I think the medical community will eventually catch up and begin to honor this reality of ours. Some research is already underway. But until it is broadly recognized, I want you to hear this: Your experience is valid, even when the system fails to see it. And sometimes, being believed is as important as being treated.

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.