Post by piinksugar on Jun 17, 2014 10:39:19 GMT -8
Another poster suggested I make thread on how it feels to be embarrassed about your SCI and the mental anguish associated with it.
I have struggled with poor self image and social anxiety tremendously since my injury. I am also a vent user which makes my situation even more prominent to others which attracts a lot of attention in public places which really, really screws with my head and emotions.
I am unsure if I'll ever be able to get over these feelings. I'm wondering if there's anyone else in a similar situation
piinksugar, I used to feel very conscious in the beginning when i was first in a chair. I hated looking up and everyone and i was concerned that i would not be seen as a 'regular' person anymore. I learnt to overcome issues but then its all relative..your reasons may well be different to mine. Its very understandable to feel how you do...Im confident that it will get better for you..because you dont want to be restricted by this.
People do look..its natural but we arent so interesting to general people for too long....Im sure their mind wanders next to thoughts of what they are having for dinner etc...we are soon forgotten about so try not to give this all your thoughts. They will keep you a prisoner otherwise ....
piinksugar, I was also like you in the beginning. I hated when people always looked at me but eventually I got over it. Vent or no vent, wheelchair or walker, people will always look at you when they see something they're not used to. It's just human nature and it's best for us to accept & ignore it.
This remains me.... I, alone, went to get my braces adjusted. Afterwards I had to sign a receipt. The lady asked me "do you typically sign your paperwork or does someone else?" She saw me use my wheelchair and grab the paperwork. I realize she had good intentions but that threw me for a loop. Able bodied people think all disabled people are retarded.....and she worked in a prosthetic shop!
No matter how we look, people make assumptions and if we are different in any way, they may stare. I personally don't mind the staring if it is out of simple curiosity, and I don't even mind a genuine question if the person is tactful. It is an opportunity to help an AB understand something that is not imaginable unless you are there. When a friend of mine got shot and started life in a wheelchair, I asked a lot of questions in the course of working with her to remodel her home for accessibility. What I learned then (over 20 years ago) has helped me cope so much better now.
You are young, and of course appearance seems more of an issue then. But, as Lαrα said in another thread, my first impression of you was how lovely you looked and I didn't notice the vent until I read your post and looked again. You obviously know how to put an attractive look together, but the most important beauty shines through from the inside. Concentrate on this and you will radiate to others and build confidence in yourself. Truly you can be empowered by your thoughts, or destroyed by them.
Maybe because I am older now, people don't look so much at me. But I have been judged unfairly in the past based on appearance, and I had to decide to not let that define me. You are still learning who you are and shaping who you will become, a precious time. Let yourself be known for a smile, a kind word, being a good listener, thoughtfulness, and the vent will of little consequence. Some people will be uncomfortable with the idea of disability, as if it is contagious! If people feel toxic to you, back off and know there are others who will accept you as you are. We need our energy for healing and living, so toxic people can be left behind!
Post by peacewillcome on Jun 17, 2014 19:04:20 GMT -8
Pink sugar i too feel self conscious not just because of the wheelchair but because i have a movement disorder and have involuntary movements in my face , arm Hand and legs. One one occasion my facial grimacing was so bad that i literally stuck out my tongue when trying to smile I Overcame a big hurdle recently and actually spoke publicly for one and a half minutes at a public event . I doubt i would have done it if it had not been to honour a person who died who had been very compassionate to me. I feel like carrying little cards that explain myself so i dont feel the need to. I have lots of anxiety about everything going out.... Will i be able to get in? What will the bathroom be like? Will i be able to handle my condition? How will my pain levels be? I am expanding my circle a little as i get more comfortable but it is hard.
I agree with everything wave wolf said and by the way, i too never noticed the vent until you mentioned it! I think we have to do things, go places and be around people who give us energy as much as possible ( not that i go many places but i am trying more now) Most importantly do things we enjoy. Thanks for talking about this
Pink sugar i too feel self conscious not just because of the wheelchair but because i have a movement disorder and have involuntary movements in my face , arm Hand and legs. One one occasion my facial grimacing was so bad that i literally stuck out my tongue when trying to smile I Overcame a big hurdle recently and actually spoke publicly for one and a half minutes at a public event . I doubt i would have done it if it had not been to honour a person who died who had been very compassionate to me. I feel like carrying little cards that explain myself so i dont feel the need to. I have lots of anxiety about everything going out.... Will i be able to get in? What will the bathroom be like? Will i be able to handle my condition? How will my pain levels be? I am expanding my circle a little as i get more comfortable but it is hard.
I agree with everything wave wolf said and by the way, i too never noticed the vent until you mentioned it! I think we have to do things, go places and be around people who give us energy as much as possible ( not that i go many places but i am trying more now) Most importantly do things we enjoy. Thanks for talking about this
lol Thank you for your kind comment but I very much doubt you all didn't notice my vent, it's pretty darn obvious. It's also the first thing people ask me about when they approach me, quite the conversation piece it turns out to be. Every time I go out I know I'm going to be hounded with intrusive questions and stared at. People just won't quit. Sometimes I swear I've even felt harassed
Post by peacewillcome on Jun 18, 2014 11:09:46 GMT -8
I would notice it in person but did not see it in your picture:)
I dont know how to handle the questions myself Today i was spastically trying to get a coat on in the drs office Awoman intently watching me said What happened to you? Me - its kind of complicated Wman - how complicated? Did you have an accident? Me - well yes and no ---- like i said its complicated . Gotta go! Then flashed her a big Smile and wheeled past her but somehow " accidentally " went right over her purse. Whoops! Naughty me,( would not have done it in my power chair but could not help myself catching the edge of it with my manual chair! She apologozed profusely that it was in my way
Maybe you need a sign on the back of your chair Hi! This is a vent. I use it to breathe because i broke my neck in an accident. Otherwise i am just like you! have a nice day!
I have a sign on the back of my chair sometimes when i go out which says HUGGING HURTS. Please dont hug me.thanks.
Take care and try not to worry too much about what others think.its how you feel inside thats important Unfortunately we are always going to look different
As i mentioned on your other thread...yes i personally did notice your vent. I think what people are trying to say is that it dosent stand out to them. Your perspective of how you are seen (at this point) is going to be worse than other peoples.
You will get used to people looking when you are out but when you treat it like its no big deal then you wont notice it so much.
I can imagine its annoying when you are asked about the vent always but make a wacky story up for what happened. You can make it as crazy and funny as you like....amuse yourself with it...
My friend from rehab became injured after jumping off a motorway bridge and when i have been out with her she changes her story every time...they are getting more bizzare! It always leaves the questioner looking confused
I have a friend on Facebook that is a C5 with zero hand function. She is dependent on people for everything, but she still finds ways to do photography and painting. She was injured very young (pre-teen) and still finds a reason to smile no and then.
As i mentioned on your other thread...yes i personally did notice your vent. I think what people are trying to say is that it dosent stand out to them. Your perspective of how you are seen (at this point) is going to be worse than other peoples.
You will get used to people looking when you are out but when you treat it like its no big deal then you wont notice it so much.
I can imagine its annoying when you are asked about the vent always but make a wacky story up for what happened. You can make it as crazy and funny as you like....amuse yourself with it...
My friend from rehab became injured after jumping off a motorway bridge and when i have been out with her she changes her story every time...they are getting more bizzare! It always leaves the questioner looking confused
My self esteem is poor and yes this definitely affects how I see myself and how I perceive others to see me (did you know I barely look in the mirror? I'm too much of a chicken to stomach my own reflection). But this doesn't change the fact that people treat me poorly (at times). Nothing I can really do about that though, I just have to learn to forget them eventually.
I'm going to a therapist sometime in early July to start talking about things in regards to how I feel about myself physically. I haven't really told anybody the extent of my anxiety and have kept it hidden inside. I'm embarrassed to admit to my family how I really feel about myself.
As i mentioned on your other thread...yes i personally did notice your vent. I think what people are trying to say is that it dosent stand out to them. Your perspective of how you are seen (at this point) is going to be worse than other peoples.
You will get used to people looking when you are out but when you treat it like its no big deal then you wont notice it so much.
I can imagine its annoying when you are asked about the vent always but make a wacky story up for what happened. You can make it as crazy and funny as you like....amuse yourself with it...
My friend from rehab became injured after jumping off a motorway bridge and when i have been out with her she changes her story every time...they are getting more bizzare! It always leaves the questioner looking confused
My self esteem is poor and yes this definitely affects how I see myself and how I perceive others to see me (did you know I barely look in the mirror? I'm too much of a chicken to stomach my own reflection).
Its good time to start working on your self esteem...it wont serve you well feeling so low. You have your future ahead and this will include having a relationship..Start with a small mirror,..at first..like a small hand make up one...you wont see your vent..just what you want to see. Tell yourself you look good...you have to start loving yourself again!
Then slowly work up to the big mirror.....surround yourself with positive things..quotes on your walls..anywhere and make a note on your computer,..a diary. Every day before you go to sleep write down a poaitive from the day. Yesterday was joining the forum!!
Lift your spirits...listen to music..i know i keep saying this but it helps me lots!
Set yourself short term goals....daily , weekly and build up to bigger ones...push yourself and get yourself back on track in the world....This is your life...the only one you have..it may not be the one you imagined or planned..but its what you have,,,so make the most of it
You should tell your family. They will either chicken out and distance themselves, or they will become much closer.
You also need to tell people how you feel they are treating you. I do that with strangers all the time when I'm out. If I am with family people rarely talk to me or even acknowledge that I exist. Even when I'm paying the bill. It drives me nuts when I think about it, so I try to visualize them wearing a ridiculously silly outfit and that they have mushrooms growing out of their skull.
My self esteem is poor and yes this definitely affects how I see myself and how I perceive others to see me (did you know I barely look in the mirror? I'm too much of a chicken to stomach my own reflection).
Its good time to start working on your self esteem...it wont serve you well feeling so low. You have your future ahead and this will include having a relationship..Start with a small mirror,..at first..like a small hand make up one...you wont see your vent..just what you want to see. Tell yourself you look good...you have to start loving yourself again!
Then slowly work up to the big mirror.....surround yourself with positive things..quotes on your walls..anywhere and make a note on your computer,..a diary. Every day before you go to sleep write down a poaitive from the day. Yesterday was joining the forum!!
Lift your spirits...listen to music..i know i keep saying this but it helps me lots!
Set yourself short term goals....daily , weekly and build up to bigger ones...push yourself and get yourself back on track in the world....This is your life...the only one you have..it may not be the one you imagined or planned..but its what you have,,,so make the most of it
About the mirror thing, I have one PCA that tried to force me to look in the mirror as she caught on to my game and thought it would be a good idea for me to confront my fear and I refused to open my eyes and kept squinting. However, back In April around Easter I got my hair cut and did look at my self while I was getting my hair cut as I had a large black cape covering up my vent so it was more tolerable for me.
I want to overcome this but it's honestly impossible, it's like trying to overcome a severe phobia. It's like I'm afraid of myself which is terrible. I'm honestly appalled at myself for having these thoughts, I shouldn't feel this way at all.
You should tell your family. They will either chicken out and distance themselves, or they will become much closer.
You also need to tell people how you feel they are treating you. I do that with strangers all the time when I'm out. If I am with family people rarely talk to me or even acknowledge that I exist. Even when I'm paying the bill. It drives me nuts when I think about it, so I try to visualize them wearing a ridiculously silly outfit and that they have mushrooms growing out of their skull.
I'm pretty sure if I told my Mom for instance that I can't look in the mirror because I hate seeing my vent, body and wheelchair it would make her cry. Hence the reason I hold back on expressing things to the extent of how I really feel. IT would just upset everyone terribly.