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?

My experience began at an early age – around 7 or 8 years old. It was accompanied by misophonia. I don’t remember a specific triggering event.

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?

I couldn’t make sense of my reactions. Why did these things bother me so much but not other people.

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

I had a particularly bad episode at a restaurant when someone was jiggling their leg right in front of me. I was so exhausted from dealing with my reaction that I said, ‘there must be a name for this’ and went home and Google it.

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?

Someone jiggling their leg triggers me the most, and it doesn’t matter the speed or the rhythm. This bothers me when I am seeing it directly or in my peripheral vision. Random repetitive motion, like my husband constantly rubbing the back of his head or wiggling his feet also trigger me.

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

No, though if it is someone close to me, I’ll ask them to stop.

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)?

Pretty much the same intensity all the time. The reactions have become worse as I aged.

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

No

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).

Key emotions are irritation and anger, and I immediately try to either change my position or put something up to block my view (church bulletin, purse, menu). I have also noticed that when I sit at the very front of the church, I am not as likely to have someone in my periphery.

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?

I don’t think I have mild reactions. They’re always severe. I feel nervous and unsettled and eventually anger. Sometimes I feel nauseated. If I can, I ask the person to stop or I leave the room.

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?

I usually recover quickly once the irritant is removed.

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?

Absolutely. As I am completing this form, I am thinking of a lady in my card group who constantly rubs her thumb and first finger together. When she started this, I tried to make a joke out of it by saying she was going to rub a callous on her thumb. She just laughed and said she didn’t even know she was doing it.

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

Yes, I have misophonia and, and I’m especially sensitive to vibrations and bass beats in music that is played too loud.

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

I have sensory sensitivities. Scratchy clothing of upholstery fabric are very uncomfortable to me. Intense light gives me a migraine headache. Extremely loud talking or music is difficult to handle.

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?

I have changed where I sit in church. I always try to take a seat facing the wall in restaurants. I try to avoid places where teenagers and college students are because they’re the worst offenders. I try not to sit near a very loud person or one I know has repetitive motions.

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

Yes, it gives me a sense of dread.

How has misokinesia influenced your choice of hobbies, sports, or recreational activities? Are there activities you avoid or have had to modify?

The card group I’m in has a person who speaks with an extremely loud voice and a person with constant repetitive movements. I try to avoid sitting near these people.

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

It’s the same no matter where I am. However, I have noticed that in Europe, not as many people jiggle their leg! I’m much more relaxed there.

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?

If I see someone in the movies or on TV jiggling their leg or chewing gum, I have the same reaction as I would in-person.

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?

N/A I’m retired, but it would be the same.

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?

I try blocking the trigger. I try to push through if I know it’s only going to be a short time.

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

I’ve sent several friends emails containing info.

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?

I’m retired, but my particular career allowed me to have a private office so misokinesia wasn’t a problem.

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?

I try to avoid places I know young people congregate.

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?

My family are not allowed to jiggle their leg in my presence. If my son or grandchildren start doing this, I tell them to stop. Not ask. Tell.

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.

See above I tell whoever is doing it to stop.

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

Yes, of course. People who don’t have this condition cannot understand it. If I know someone has something similar, I’ll compare it to that. For instance, my son has misophonia, and I told him it makes me feel the same way he does when someone is smacking their lips when they eat.

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?

No, I never doubted that it was real.

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

Well, I don’t like it, but at this point I don’t think it’s going to go away. It’s up to me to try to plan to avoid triggering incidences.

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?

I don’t think any of these has had any impact.

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? 

I think it’s a neurodisability that is probably hereditary, though neither of my parents had it.

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

No. In fact, I doubt they would know what misokinesia is.

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

Facebook Group

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

Avoidance and blocking the trigger from my vision

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?

As I have aged, it’s grown worse.

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

The thing that’s most surprising to me is the inability of people to simply sit still. I see my trigger (jiggling of leg) as the person is anxious to leave wherever he is, or he is nervous about the situation he is in, or he’s gotten in such a habit of doing it, he doesn’t even know it. I find this habit exhibits great immaturity and, in the business place, unprofessionalism.

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

I’m not sure there’s anything that could exist, frankly.

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

I don’t think they’re headed anywhere. People view misokinesia as minor discomfort, not something that needs funding for research. But I’d like to see something done in the field of desensitization. I think that would help.

How do you see your future with misokinesia?

I just have to live with it.

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

That it is physically impossible for me to look at these triggers. I just cannot do it.

Do you have a message for others living with misokinesia?

Please tell me anything you’ve found that helps.

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

I don’t want this, but I cannot help it.

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

I wouldn’t wish this on anyone.