Does ME/CFS affect facial expressions and voice with negative consequences on social function?

Hoopoe

Hoopoe

Senior Member (Voting Rights)
Facial expressions play a role in communicating our emotions to other people, and voice is also important.

Do you think that your ME/CFS affects facial expressions and voice?
If so, do you think that this has negative consequences on social function?

This occurs to varying degrees in muscular disorders. Here's a video of a lady with a muscular dystrophy that affects the facial muscles.

To answer my own question, I think this occurs in my illness but in a fluctuating pattern. Fatigue and what I believe is brain hypoperfusion will affect the facial muscles and voice. And also thinking and ability to communicate effectively. I've had to learn to say something when this happens to let others know and avoid misunderstandings.
 
I think this is true for myself but I don't know if it is ME or some pre/co morbid condition I have. I sometimes catch myself in the mirror and it's almost the Parkinsons mask like face. Inexpressive and rather miserable looking, I have no doubt it puts people off wanting to engage with me. As for voice, I have frequently been told over the years that my voice is quiet when I am unaware it is. I do think there can be deep unconscious bias against this characteristic, obviously people don't like it if they can't hear but I suspect some stereotyping happens too.
 
Mine's affected more by autism, where I have to consciously remember to change my expression if I don't want to look like a Soviet border guard.

The result is that I have an over-expressive face in company. If there's no mirror opposite your seat, you can't know when you're overdoing it. Until somebody takes a reel of photos at an event, and you look as if you're giving your all playing a pantomime dame in every single one of them.

But the mask-like face isn't uncommon. Some people's facial structure makes them more prone to it, and it tends to get worse with age because everything starts to loosen up and head south. If you watch elderly people passing you in the street, they often look either profoundly depressed or bloody furious. The blank-faced ones are probably just reviewing their list of errands, and the cross ones are only frowning because their backs and hips and feet hurt like mad.
 
I'm not sure if it was ME or more Long Covid related (respiratory issues??) but first few years my voice was so incredibly weak, talking more than 2-3 minutes would physically be exhausting and I'd have to lie flat and have a break for ages. I'd be full of things I wanted to say and just unable to say them.

At the same time wasn't able to tolerate much sound or light or conversation either. It was v lonely because I was too ill to meet friends and even with close family too ill and exhausted to be able to sustain conversation. (Exhausted isn't the right word - there is no word.) More than one person talking at a time was nauseating too / intolerable trying to sort out the voices - too much on my brain, easier one to one.
 
Forget re facial expression... I can't comment on what that was like, the other aspects were the ones I noticed. I know I looked deathly grey to my family, they often commented on it & all thought I looked awful. And I could see that in the mirror. I thought at times I looked more like a corpse than a human. Somehow that was invisible at the drs who didn't know me before.
 
Don't think ME has a specific effect. Definitely not like the video above of a specific muscle disorder.

Definitely though in the way that being very unwell or sleep deprived does. A sort of slackening of muscles that then turns into a stiffness as it's its too much effort to wriggle free from whatever expression the face settles on.
 
Facial expression, not like those disorders, but obviously those who know me can tell how I am. But that’s very different.

Voice there is a more clear impact on, difficult to describe but it sort of ‘goes’ or becomes a bit off (or weak as @StellariaGraminea says) so I think something muscular is going on (be it strength or control of).
 
hotblack said:
Voice there is a more clear impact on, difficult to describe but it sort of ‘goes’ or becomes a bit off (or weak as @StellariaGraminea says) so I think something muscular is going on (be it strength or control of).
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Before I was diagnosed with ME/CFS, I spent years trying to figure out what was going wrong with my voice, which seemed to be getting weaker, losing its lower register, require more breath, etc. Multiple ENTs observed paresis of one of my vocal cords - which, at least for a time, seemed to be transient (there were visits where it seemed nearly normal, others where it was severely impaired). None of them could come up with any explanation for why it was happening or why it did not respond to therapy. I eventually gave up the investigation and attempts to treat it around the time that I began to seriously decline, as other issues quickly took precedence. The symptoms certainly continue.
 
In the first decade of my illness, when I was more severe, my family could tell how ill I was feeling by the sound of my voice. It used to go all strange, high pitched and crackly. I have seen photos of myself from that era and my face is pale and mask like. Smiling clearly required too much energy. I also had the tell tale dark rings under my eyes.
 
I have no personality when I’m fatigued or in pain. It kills me to crack a smile, my brain can’t manufacture small talk, it cant even cope with tangential conversation, my voice is flat and starts to disappear.
I expect there is some neurodiverse masking that I’m too exhausted to facilitate at these times. Other people do not like it/don't make allowances for it. Friends and family are used to it and recognise it’s me going downhill, not “pretending”.
I’m sure I read something recently about ME stealing your personality and it was all of these things, I thought it was a brilliant read. No idea where I saw it now.
 
YES — hugely for me. My voice is weak and it requires a lot of effort — I run out of breath especially if I have to speak more than one sentence concurrently.

Facial weakness resulting in a mask like effect that comes on during social visits is also a problem. Especially meeting new people I tend to try and smile and emote more (eg raising eyebrows as part of smile) in an effort to connect and engage — my face quickly tires, my eyes struggle to stay focused on someone and start to drift down — the eye muscles tire quickly. Same with the facial muscles required to maintain a smile.

Outside of social visits, just later in day when more fatigued, my sister says my eyes become “wild” and “wide” when I’m talking, I think bc I’m making so much effort to keep them open and focused. My face also becomes puffy and stiff and looks mask like.
 
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