Bell's Palsy Support Group
Bell's palsy (facial palsy) is characterised by facial drooping on the affected half, due to malfunction of the facial nerve, which controls the muscles of the face. Bell's palsy is the most common cause of acute facial nerve paralysis and affects about 40,000 people in the United States every year. Additional symptoms that may accompany the condition are pain around the...
Hi.. I've been trying to find a support group for a while now. A disturbing number of them are either fake or seriously outdated and empty ( without actual people). I hope this is different.
I've had bells palsy for a while now ( about 13 years).. I'm 17. I'm from Nigeria and its not really common there so I grew up as "the freak". I can't remember when I didn't have it. I actually thought I was born with it, my mum told me about 2 years ago that I wasn't. I hate it. The worst part of all this is that I never even notice it myself. Like I said I have been with it for a while now.
Oh.. A side note. I will refer to it as "it". I also hate the name. It feels too real... I don't know if that makes sense.
So. I never notice it.. Till I'm smiling or laughing in my careless and crazy way and some stranger looks (stares) at me in disgust or fear. I need to add this. I'm ugly. I'm not kidding. You know when ridiculously pretty people call them selves ugly? This isn't that. I wish that was the case but it isn't unfortunately. I am deoressed because of the bells palsy and also because I come from a place where beauty is valued HIGHLY. My father thinks letting me attend college is a waste of time and money. I don't blame him. I think so too. I had a surgery for it( "it"). It didn't help. You couldn't notice it before the surgery till I smile . Now I get stares by just walking. I read online that it is usually cured of it is caught an notices on time. I've had to live half of my life with insults from even my mum for my "stupid bad habit". Who does that? Children eat mud and do stupid stuff when they are little, they don't "disfigure" themselves on purpose and get emotionally abused for fun. It just doesn't happen. I believed, when I was little, that when I grew up I could get rich and my face wouldn't matter any more. I was "surfing the net" a few weeks ago when I came across some random statistic that claims attractive women are more likely to get jobs. That's all I saw but I am honestly too scared to do any research and find out if it actually real. I don't feel comfortable being happy in public because you never know when a smile would slip through. I hate this and I hate that I have to live like this. It's permanent though. So... I don't know.
I promised myself that I'll try to live like this. I'll try. If it doesn't work out well I tried. Does anyone else feel this way? Feel sub-human? Less human and more creature.. Maybe its just me. Maybe I'm simply crazy and over exaggerating everything. I've heard the its not the end of the world speech repeatedly and I don't believe it. It's from people who don't know what I have to go through daily. I need to hear from people who have to deal with this. Is this normal? Is it okay? I should be happy because I'm alive right? I don't feel like I'm living. Am I being silly? Be honest. Please, I need it.
I've had bells palsy for a while now ( about 13 years).. I'm 17. I'm from Nigeria and its not really common there so I grew up as "the freak". I can't remember when I didn't have it. I actually thought I was born with it, my mum told me about 2 years ago that I wasn't. I hate it. The worst part of all this is that I never even notice it myself. Like I said I have been with it for a while now.
Oh.. A side note. I will refer to it as "it". I also hate the name. It feels too real... I don't know if that makes sense.
So. I never notice it.. Till I'm smiling or laughing in my careless and crazy way and some stranger looks (stares) at me in disgust or fear. I need to add this. I'm ugly. I'm not kidding. You know when ridiculously pretty people call them selves ugly? This isn't that. I wish that was the case but it isn't unfortunately. I am deoressed because of the bells palsy and also because I come from a place where beauty is valued HIGHLY. My father thinks letting me attend college is a waste of time and money. I don't blame him. I think so too. I had a surgery for it( "it"). It didn't help. You couldn't notice it before the surgery till I smile . Now I get stares by just walking. I read online that it is usually cured of it is caught an notices on time. I've had to live half of my life with insults from even my mum for my "stupid bad habit". Who does that? Children eat mud and do stupid stuff when they are little, they don't "disfigure" themselves on purpose and get emotionally abused for fun. It just doesn't happen. I believed, when I was little, that when I grew up I could get rich and my face wouldn't matter any more. I was "surfing the net" a few weeks ago when I came across some random statistic that claims attractive women are more likely to get jobs. That's all I saw but I am honestly too scared to do any research and find out if it actually real. I don't feel comfortable being happy in public because you never know when a smile would slip through. I hate this and I hate that I have to live like this. It's permanent though. So... I don't know.
I promised myself that I'll try to live like this. I'll try. If it doesn't work out well I tried. Does anyone else feel this way? Feel sub-human? Less human and more creature.. Maybe its just me. Maybe I'm simply crazy and over exaggerating everything. I've heard the its not the end of the world speech repeatedly and I don't believe it. It's from people who don't know what I have to go through daily. I need to hear from people who have to deal with this. Is this normal? Is it okay? I should be happy because I'm alive right? I don't feel like I'm living. Am I being silly? Be honest. Please, I need it.
Mae03091
I searched initially for people with bell's palsy more than two years because I'm looking for advice from those who had surgery... Full blown, do everything you can surgery. There is NOTHING silly about BP *or it Next month it will be three years since it changed my life forever. Taking away my ability to smile, other things of course. has affected my happiness in ways I could never have imagined. I have tried prednisone and antivirals... but not until 9 months in after a recurrence!!! Damn incompetent doctors! A chiropractor, physical therapist e-stim at home, an acupuncturist, and had two MRI's before trying some corrective surgery to raise my brow and be able to blink my eye. (Unsuccessful), and a little botox to try to relax the other side of my mouth. (uncertain results) Already more than I can afford even though insurance paid for some.. But still miserable. Drinking too much, feeling depressed and gaining weight has been the only thing to come if it. To make things worse, I was only married 6 months when it happened. I have decided I will never be happy like this, I have tried to 'deal' but there are too many incidents (a 6 year old stopping in the middle of his sentence to say in surprise "is that your face?! ") My heart aches for you having lived with this your whole life. I am so very sorry! OK, this has gotten very long, and I don't know if it's helpful... But I would REALLY like to hear from anyone who's had surgery or botox stuff, how it went, who, etc. Better yet, if anyone recovered on their own after more than two years. Thanks and love sent to all dealing with this pain
chiomandupu
I've had a surgery...surgeries, I've had botox, physical therapy, a nerve stimulation thing, etc.. All useless but that's probably because my parents waited for a full 10 years before taking me to a doctor... Smart right? Genius.. Just don't do the surgery. You will accumulate debts insurance or not, and the chances are that it won't even be fixed. There is no corrective surgery. Take it from some one who has spent years being a lab rat. They are NOT working on it. Any doctor that tells you that he or she can fix bells palsy with a surgery is just plain LYING and probably just after money. Bells palsy has no cure and no one is working on a cure. The medications have never been proven to work, your probably just damaging your body even more. I have 8 scars from different surgeries and I can assure you that all they did was worsen the situation, alter my bone structure completely. My smile was asymmetrical before now my entire face is asymmetrical. Smile or no smile. Just don't do the surgery, don't do any surgery. Botox won't help either. I've had it. You know when you forget that you have bells palsy . those precious moments. Botox takes that away. I don't know how else to explain it. Anyone doctor or whatever who tells you that they can help is simply lying and after your money. These days I just tell myself that I don't have to be here. It makes living better. Dying is my gateway to freedom, whenever any jerk decides to give "comments" on my face and appearance I simply remember that living is a luxury. Life is a luxury. Once you don't need it you trash it. It's just not worth the pain. Living is a lot easier knowing that I have a way out, an escape route. Oh and surgery is also painful, physically PAINFUL. The emotional pain is another story. Just don't do it. I don't know how else to convince you... Or anyone else reading this.
Mae03091
Thank you for letting me know! I really will take that into account I'm looking at things much more critically these days. Did you happen to have either CROSS FACIAL NERVE GRAFT or GRACILIS MUSCLE TRANSPLANT. That's what I've been thinking about...
chiomandupu
Both. I've had both
Mae03091
I'm so sorry. Life is often unfair. You really have tried everything. It takes strength of character to keep going and still reach out. Family is always complicated. I play games. Chat (messaging) to others I play with. It gives me an outlet to chat and joke without worrying about looking people in the face. If you have any outlet for fun, it really helps increase those 'forget about it' moments
chiomandupu
It does. Messaging helps a lot
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