13. Appearance

Symptoms – Appearance

A. Context

How people appear to strangers is a key factor in social ease, people with dystonia often express concern about how they appear. Some try to mask neck tilts with scarves, face anomalies with masks, and try various gestures like leaning against walls to appear in normal casual pose. Others reduce social interaction due to appearance and fear of stigma. Many fear their appearance is a factor at being hired for certain jobs.

How one appears in the mirror affects self esteem and self-acceptance. Some patients report they deal with low self-esteem daily, even not wanting to be in photographs, not wanting to be seen in webinars.

Those whose dystonia affects their speech may by physical appearance seem like the general population and easily accepted but once they try to talk notice a real shift. Their problem speaking creates frustration and they report difficult social interactions as they try to speak on a telephone, do a public speaking role, speak at a conference, talk at a drive-through.

B. Comments

from clinical studies and researchers

Dystonia is one of the most visible disabilities

from patient experience

how they may appear  to others

At least with covid masks nobody can see my face twist

I am a one person freak show

My head nods so much I look like a nodding dog

I stand like the tower of Pisa

I am becoming the crooked man who walked a crooked mille

I am thinking of changing my name to Eileen

I have a dromedary walk
I have a robotic walk

I just point to my neck and say ‘damage”

I walk like a wonky donkey

I walk like the Tin Man

It is hard to look in the mirror at my bendy straw neck

My body is twisted like a corkscrew

My head is like a bent doll

When a group of us get together, neighbors may think it is the apocalypse

Dystonia has destroyed my posture

I must look like a bobblehead

Before dystonia I always felt I had a beautiful neck

My mirror reflection disgusted me at that point
Sometimes I feel like a freak

how they may sound to others

I am croaky

I sound like a cartoon character on helium

I sound like a frog

I sound like the 3 stooges

C.  How to ask

 Source of question ideas: – patient reports, clinical studies, biographies


D. Question categories

appearance in mirror or to strangers

lumps, knots

sensitivity, ability to feel  heat, cold, roughness

E. – Questions asked  -survey number, question number

surveys 2A and 23

F. Results of questions – percent answers per question


2A       217            symptoms        26            40                    76                                5

23        24            symptoms        18            24                    81                                3

max. no. respondents                 217

total questions                         64

likely type of dystonia  – all

percent of all respondents doing survey   217 or 508  or 42.7%

(It is assumed for all surveys that those who did a topic in the first group were the only ones like to proceed to the second set. That also is an assumption but is likely true)

G. Results


(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one,, question 3)

Do you have tight muscles forcing odd postures?

            74.26% yes

            25.74% no (1-1)

Is your dystonia visible to a stranger?

            80.82% yes

            19.18% no (1-18)

Does your dystonia make a muscle pop out or stick out?

            33.50% Yes I often see a muscle sticking out prominently

            19.50% Yes I sometimes see a muscle sticking out prominently

            26.50% No I see no muscles sticking out more prominently (2A -1 3)

physical appearance

            33.33% some muscles are thicker, as if I am a body builder in that part

            45.83% My neck muscles stand out oddly

            8.33% My thighs are flabbier

            58.33% My head is tilted

            20.83 My body is tilted\

            50.00% My tremor is visible

            37.50% My dystonia is not visible to strangers- eg. vocal cords (23-1)

physical appearance – legs, feet, toes

            0% My dystonia muscles look oddly big on one side of the body

            33.33% The way I move may make people think I’m drunk or on drugs

            66.67% My dystonia is visible to strangers (32-1)

self confidence and appearance

            66.67% I am sad my dystonia is so visible

            50.00% I am sad if someone mistakes my tremors for nervousness

            50.00% I look in the mirror less now (39-2)

pain and facial expression

            15.26% You can’t tell by my face that I am in pain

            25.79% I tend to scrunch my eyes when I am in pain

            38.42% I tend to tense my jaw when I am in pain

            4.74% I tend to flare my nostrils when I am in pain

            43.68% I try hard to not look like I am in pain (2A-25)

lumps, knots

            54.72% I can feel lumps or knots in my affected muscles

            28.77% The physiotherapist or doctor says they feel lumps or knots there

            23.11% I do not feel lumps or knots in the affected muscles            (2A -5)

H. Analysis

Respondents reported that a stranger can readily see their medical problem in 66.67% -80.82% of the cases.

The concerns seem to be

74.26% odd postures

58.33% tilt of head

50.0% visible tremor

45.83% – 53.0% muscle sticking out prominently

33.33% motion appearing like drunk or on drugs

20.83% tilt of body

43.68% say they try hard to not look like they are in pain. Such an effort may suggest shyness, fear of mocking or of  negative reaction or consideration to not worry others nearby.

Some expressions of pain however are likely involuntary such as wincing at sudden pain. The way that pain is expressed on the face may be a potential metric for pain assessment however, if there is involuntary tightening of muscles when pain is experienced.  Such metrics have been devised by vets examining cats to measure their pain.  It is difficult to find an objective pain measurement, so responses may capture both the technical magnitude of pain and the way this person registers the pain.

38.42% say they tense their jaw when in pain

25.79% say they scrunch their eyes in pain

15.26% say an observer cannot tell by their face that they are in pain

4.74% say they flare their nostrils when in pain

Some patients report that they hold their breath, or blow air gently out to suppress more dramatic reaction. These may be subtle indicators of efforts to cope with and sometimes mask pain.

The presence of a visible lump or knot of a muscle, seems to startle patients and is a cause for many on social media to photograph this muscle for others to see.   The fact of photographing it suggests a few other factors:

-the muscle being visibly odd, is proof and confirms to the patient that the condition is not imaginary

-some patients express loss, sadness, embarrassment when their physical appearance is changed

Patients express concern about what forms the muscle knots, and what may reduces them. Athletes often find muscles knot up and they need massages and workouts to stretch them.  In muscle knots in the general population the cause may be poor posture, inadequate support sitting, toxin, over-exercise, lifting weights improperly, injury due to a fall. The link between that type of knot and dystonia knots may be useful to explore.

-the cause of muscle knots can be poor nutrition or dehydration. With dystonia if the person has trouble chewing or swallowing there is risk they will have those factors for muscle knots.

-a muscle knot can be the size of a pin head to the size of a thumb. With dystonia the muscle knots seem much larger. In the mirror,  in photos and to the touch patients say they often seem very large.

-muscle knots are caused when the actin and myosin fibres shorten as the muscle contracts. Briefly the blood moves away from the area and less oxygen reaches the muscle. It is not clear whether in  dystonia there is less blood or less oxygen getting to the dystonia muscle,

-muscle knots can be alleviated by rubbing the area gently in a circular motion or by heat and cold. These strategies also seem to reduce some of the pain of the dystonic muscle but not all of it. The knot of the dystonic muscle seems much tighter and more resistant to being reduced by massage.