When did you first notice that watching certain repetitive movements caused you discomfort? Can you recall the specific age or life stage, and do you remember what that first triggering experience was like?

Just began noticing that feet bothered me, also repetitive sniffing. I was about 12 years old.

Before you knew there was a name for it, how did you make sense of these reactions? What did you tell yourself or other people?

Just thought I was the problem. I was scolded when I tried to explain myself, told I was too sensitive, was looking for things to complain about and to stop it.

How did you first discover the term “misokinesia,” and what was it like to realize there was a name for what you were experiencing?

A few weeks ago I asked Gemini why I was this way, which led me to information.

What kinds of repetitive movements trigger you most, and what is it about them? The body part, the speed, the rhythm, the size, how predictable or unpredictable they are, whether you’re seeing it directly or in your peripheral vision, or something else entirely?

The sight of bare feet and toe wiggling. It doesn’t matter if it’s peripheral or central. Children or baby feet don’t bother me.

Does who is making the movement affect your reaction (for example, a stranger versus someone close to you)?

Anyone, even if it’s a tv commercial for toe fungus.

Do you experience reactions to your own repetitive movements, or does it only happen when observing others? If you can trigger a reaction in yourself, how does that experience differ from watching someone else?

Only others

Does the intensity of your reactions vary day-to-day? What internal or external factors seem to make your misokinesia better or worse (such as stress, fatigue, anxiety, or your environment)?

Worse with stressors, become less patient and tolerant. Only blocking my vision or leaving the room helps my rage.

Are there any repetitive movements or visual patterns that you actually find calming or enjoyable? If so, what makes them different? 

If visual patterns are colourful, especially geometric ones, Mandela’s or kaleidoscopes for example.

Can you walk me through what happens in your body and mind when you see a triggering movement? I’m curious about the full experience — the physical sensations (like tension, itching, or restlessness), the emotions (like anxiety, irritation, or anger), and any immediate urges or impulses you feel (like wanting the person to stop or needing to leave).

I’m instantly enraged, so angry I want to lash out verbally and physically. But I push it all down because of previous invalidation.

Can you help me understand the range of your reactions by describing what a mild reaction feels like versus a severe one? How do these different intensities affect your ability to function in that moment?

No mild reaction only intense. Can’t function at all if it’s in my vision field.

Once a triggering situation ends (whether you’ve left, the movement has stopped, or the person has moved on), what is that experience like for you? How long does it usually take to recover, and is there anything that helps?

Immense and immediate relief, but fear they may start again.

Can remembering a past triggering experience bring back some of the physical or emotional sensations? How do memories of triggers compare to the real-time experience?

Definitely

Do you also experience misophonia or sensitivities to repetitive sounds? If so, how do those experiences compare?

Yes, I experience the anger and disgust the same with both.

Beyond that, do you experience other sensitivities, neurodivergent traits, or conditions? If so, how do they interact with your misokinesia experience?

None that I m aware of.

In what ways has misokinesia shaped your daily life — the choices you make, the spaces you seek out or avoid, the things you plan around?

If I have to be around the experience, I brace myself and plan ways to move about the room, look out a window, go to the bathroom, close my eyes or leave. I can’t ask them to stop because everyone thinks I’m being unreasonable, I get so angry I hate it. Some people I don’t want to be around or visit.

Do you experience anticipatory anxiety about potential triggers before entering certain situations? How does that affect you?

Yes all the time.

How has misokinesia affected your experiences with transportation and travel — on buses, trains, planes, or elsewhere?

No

How do misokinesia-related triggers on screens (e.g., video calls, social media, movies, gaming) compare to in-person triggers? Do you find yourself avoiding certain media as a result?

Just as horrible.

Has misokinesia influenced your career path, job choices, or educational decisions? Have you avoided certain fields, roles, or learning environments?

No

How does misokinesia affect your daily experience at work or school?

Very little

What coping strategies or workarounds have you developed to manage it in those settings? Do you ever feel pressure to hide your reactions or ‘push through’ triggering situations?

Always

How do you decide whether to disclose your misokinesia to employers, teachers, or colleagues? What factors influence that choice?

Due to past invalidation I don’t disclose it recently I tried with a best friend and they were completely defensive and blamed me because it was my problem.

Do you feel you need accommodations or support at work or school because of misokinesia? Have you been able to ask for them, and if so, what happened?

No

Has misokinesia affected you financially — whether through direct costs, career impacts, or the everyday expenses of creating environments that work for you?

No

How does misokinesia affect your social life? Are there types of gatherings or social settings that are especially difficult to navigate?

Anywhere there’s eating with no background noise to block it or anywhere there may be bare feet

How does misokinesia impact your close relationships with family, friends, or romantic partners? How do they react to your sensitivity, and how do you navigate these interactions?

They refuse to believe and show empathy

Does misokinesia play any role in your experience or thoughts around parenting — past, present, or future? I’m curious about everything from whether it influenced your family planning decisions, to how you navigate it with your own children if you have them.

No

What’s it like explaining misokinesia to others, and have you ever felt misunderstood or judged in response to your reactions? 

Everytime

Because misokinesia is so little-known, have you ever found yourself doubting your own experience, or feeling pressure to prove that what you’re experiencing is real?

I want people’s support and understanding it’s hard to discuss when I get put down every time.

Do you ever find yourself judging or criticizing your own reactions to triggering movements? If so, what does that internal experience look like?

Not since I discovered that it’s a legitimate condition

How do you think your other identities — such as your gender, race, age, socioeconomic background, or cultural heritage — have influenced your experience of living with misokinesia or how others respond to it?

Not sure

How has having misokinesia shaped your worldview or your sense of identity? Do you think of it as a disability, a difference, or something else? 

Disabled

Have you ever spoken to a healthcare professional about your misokinesia? What was that experience like?

Not yet, it’s very new to me.

Have you found any online communities, research, or resources that have helped you feel understood or supported in your experience with misokinesia?

Not yet.

Looking back, what coping strategies have been most helpful over time?

Leaving or avoiding the situation altogether

How has your experience with misokinesia evolved or changed over time? Has it gotten better, worse, or different in other ways as you’ve aged?

It’s gotten worse

Looking at the whole picture, has anything surprising come from your experience with misokinesia — positive or otherwise?

No

What kinds of support, accommodations, or understanding do you wish existed?

More public knowledge. Why so misunderstood if it affects 1 in 3 people?

How do you feel about where misokinesia research and awareness are heading? What do you wish researchers, doctors, or advocates would prioritize?

Public education

How do you see your future with misokinesia?

Grim

What would you most like people to understand about living with misokinesia, and are there any misconceptions you’d like to address?

It’s not my fault or within my control

Do you have a message for others living with misokinesia?

Find help much earlier ( I’m 62 and just learned about it)

What message would you like to share with loved ones of people with misokinesia — partners, family members, close friends?

If you truly love and value me you would try to understand and help.

Is there anything else you’d like to share about your experience?

I dislike having an internal rage I have to contain