visible disabilities v. non-visible disabilities

[Gennysmom]

I have a question for anyone out there able to answer....the one issue I keep thinking about in my recovery is that for most of us our "disability" is a non-visible one, generally not apparent to anyone who doesn't know...and I'm sure I'm going through a process of dealing psychologically with the fact that I have a disability...but I wonder how different it is for those of you with visible disabilities as well....how did you cope with it versus the visible one?  I feel like I want to remind people that I'm not the same because they don't really see it to notice it....because I don't want anyone to think I'm a dingbat for no apparent reason    But I also get tired of hearing myself say "you're talking in my deaf ear" too.  I have a co-worker who is a serious burn victim from many years ago and am thinking of asking him about the process he went through to find the new normal....I'm really curious about other's journeys.....I hope this makes sense because I'm having one of those fuzzy headed days....

[ppearl214]

Kathleen,

I have a book that was given to me when I first took ill a few years back... maybe worth checking into:

Title:  Living well with a Hidden Disability - Transcending Doubts and Shame and Reclaiming Your life.
Author:  Stacy Taylor, MSW, LCSW with Robert Epstein, PhD.

It covers many different topics of so called "hidden" illnesses and how to cope and such... the book has helped me emensely over the years.

Just a thought.
Phyl

[Gennysmom]

Sounds good....still would like the comparison if someone is dealing with a visible and a non visible disability.  I know what the non visible is like and it makes me wonder what it would be like if it weren't hidden....if I'd feel any different about it. 

[yardtick]

Kathleen,
My dear friend Kathie who I work with always tells me "It is so hard to believe you are sick considereing you look so good."  My response is.....I work very hard at it.  I make sure my make-up and hair is always done, because that makes me feel good inside.  I also think the glass is half full, not half empty.  I delagate more at home, with a husband and four sons ages 16-20, if I didn't delagate I'd be in the dungeon doing laundry and cleaning bathrooms!!!  I find humour in everything.  If I couldn't laugh at myself and at life in general, I would go crazy!!!!!!!   I have  great support system, my husband, my boys, my cousin Teresa  and a few special friends. 
When I'm down I read a great novel and loose myself in it.  A good movie helps, and last but not least prayer.  I did ask the Dr for some happy pills back in January and I have to say it has taken away some of my anxiety.
I'm not making light of your comments, I too get frustrated but it does pass. 
Anne Marie

[Brendalu]

I work hard to make sure that hair, makeup and clothes are okay when I go out in the public.  I get the same reaction...how can you possibly have a disability?  I get glares when I get out of my vehicle when I park in the handicap spaces.  The old guy at Walmart actually gets me a cart now because he has seen me fall so many times.  Always asks if I want a scooter. (He hasn't seen me drive!)  I think that people with visable disabilities have an advantage when it comes to the general public.  I get tired of my family getting upset with me because I don't know where a sound is coming from!  I think they expected that to change after a certain amount of time.  But hey, I have a neurologist or rather had one who thought that my hearing was coming back.  Every time I went to his office he would snap his fingers on my deaf side and say, "Still no hearing, yet?"  I quit going.  Apparently he doesn't hear well or read well.  I guess I have finally decided that I am not going to wake up and find that this was all a dream.  After all this is Houston, not Dallas.............................
Brendalu

[Raydean]

Hi kathleen

Chet was visiabily disabled, whereas my daughters medical problems were not visable on the surface.
Generally, people were more understanding with Chet. would reach out more, would try to assist,  where as with my daughters it would be  stares, rudeness, snide comments as to why she might need a handicap parking space.   It was as if they were invisible.  At first I thought the difference was due to the age difference, but as time went on I became aware that it was related to visible and non visable disabilities and how it's perceived by others.  IMHO it's much harder for those with invisible disablities.  There's an edge of negativeness to it, to the point where at times it takes it toll on the self esteem.   It wears on you. and at times can bring you down.

 People are less understanding, more likely to look right pass you.  Both my daughters has stated during the times when they have had to use either a cane, crutch, or boot/cast,  (a visible aid) generally people were more understanding, would even ask questions as what the cause of the medical problem is.

kathleen, I've spoked before of having a facial deformity as a child that was corrected at an adult (in my thirties) where as I'll never be consider one of  beautiful people , it did help me to feel and look  lnormal as well as correcting the medical issues.  I can clearly remember as a child and young adult wishing that i had a medical  problem that I could hide, cover, that wasn't out there for the whole world to see on a daily basis.   Because of the facial deformity, and speech impediment it was assumed that I was also mentally handicap. Even as an adult i found that i was talked down to.  Maybe that's a big part of the overall picture.  Dealing with others biases.

Not sure this makes sense, hope it does.

Hugs
Raydean


   

[Gennysmom]

Thanks everyone....I truly am OK, Anne Marie I live my life very similarly, I'm just an innately curious individual, especially when it comes to psychology, and now that I know what it feels like to have an invisible disability, I wonder what it's like for others.  Raydean, I know how hard it's been for many in your family...thanks for being my friend.  You are one of the most intelligent, articulate, sympathetic people I know...beauty comes fromt he inside anyway, the outside is just a matter of opinion.  You know I really think that if someone wants to discriminate, it's a great warning signal that this is someone you want to avoid anyway....know what I mean?     Actually there are some days that I think I should use a cane just to cue people in that something isn't right with me.  I go down to the farmers market and try to navigate the crowds every week, and that's probably one of the hardest things I do...

Anyway, don't want to alarm anyone regarding being "disabled", but what that really means to me is that I lack an ability that I once had, which can simply mean that I am no longer hearing in one ear.  There are other issues, but I'd also like to take away the seemingly negative stigma that "disability" seems to have in the so-called "normal" world. 

Brendalu...I know that doctor's can't all be expected to know every thing, but seriously....I'm glad you're not still seeing that one, I'd have to wonder about you!      

An interesting comment from my boss during my recent evaluation....her brother in law has had two strokes, and when we were discussing my continuting recovery (a year later) and that things were still improving, the light bulb went on and she said, "so this is kind of like recovering from a stroke" and she GOT that brain injury recoveries are impossibly slow, all kinds, not just strokes or injuries from blunt trauma. 

[Brendalu]

Kathleen...........................I wonder about me daily!
Brendalu

[leapyrtwins]

Thanks Kathleen for starting this subject.  I'm hoping someone who reads this can help me with my non-visible disability dilemma.

I had AN surgery on 5/31 and thankfully have no visible signs of my surgery, except for the scar behind my left ear that is rapidly being covered by my hair.  I experienced minimal facial nerve damage that was cleared up with steroids in the hospital; and my post op, unsteady gait gets steadier every day.  I have some non-visible issues - dry mouth, metallic taste in mouth, occasional dry eye, and SSD.   The SSD is where my dilemma comes in.

Prior to my surgery, although I had diminished hearing, I still had good word recognition and could make out a fair amount of what others were saying to me.  Now I am completely deaf in my left ear.  When I returned to work I explained to my staff, my boss, and the rest of my colleagues about the deafness.  I know it's totally unintentional on their part, and that life isn't all about me, but I am getting very frustrated by everyone speaking into my left ear.  I do what I can to turn my body so that I can hear better, and in meetings, I consciously sit where I can hear the majority of the people.  Just the other day, during a training session at work, a colleague (who incidentally is a medical professional and had extensive conversations with me about my AN both before and after my surgery) sat down on my left side and proceeded to make small talk the entire session.  I have to be honest, I just smiled, nodded, and pretended to know exactly what she was saying to me, when in reality I didn't have a clue. 

I don't want to keep harping on people about my deafness, but at the same token, I don't want to miss a crucial conversation, or appear rude when I don't respond, or respond incorrectly, to what someone is saying to me.  Has anyone found an effective way to deal with something like this?  I'm hoping things will improve greatly when I get my BAHA early next year, but until then I need some suggestions.

Thanks.


 

[yardtick]

Hi Brendalu,
I understand where you are coming from.  My biggest complaint at work is the radio.  If it is too loud, I'm lost.  Someone can be directly in front of me and I have to basically read their lips.  I work for a Credit Union.  The computers, the phones, the chq imager, the chit-chat.....some days are just overwhelming.  My only scar is also behind my left ear.  Here's something that will make you laugh.  The other day one of my co-workers was giving me a ride.  I don't drive, I just drive people crazy!!!  Her head light had duct tape on it.  I asked her what happened.  Her son was up in Timmins On taking the fire figthers course and he had the car.  I thought she said it was a moose but she said it was loose.  Gosh did she laugh, she had tears in her eyes.  When ever someone at work says they can't hear I tell them that's my excuse they better find their own.  Like I said before I have laugh I'll go crazy or even worse cry.  At least we have this forum where we can all crab and encourgage each other.

Anne Marie

[Boppie]

I have a suggestion...wear one earring or stud every day on your good ear.  People will mention that you are missing one earring.  You can say "No, it is my reminder to others that I have this one good hearing ear."  Soon they will start looking for your good side."  It worked for me!  I did this for several months before I bought my TransEar.  Now, I can go without the TransEar some days and my friends still know where my good ear is by my earring. 

[leapyrtwins]

I have a suggestion...wear one earring or stud every day on your good ear.  People will mention that you are missing one earring.  You can say "No, it is my reminder to others that I have this one good hearing ear."  Soon they will start looking for your good side."  

Great suggestion, Boppie.  Subtle, but gets the point across.  I'll have to give it a try.  Thanks.

[lora]

Yay Boppie--I LOVE this idea--it makes me want to grt the biggest, gaudiest earring I can find (think 80's disco wear)--Lora

[Boppie]

Sometimes as a reminder I wear my own specially desgined earring.  I bought "Ear" bracelet charms and mounted them on posts.  The ear is very small and sterling silver but still big enough to be seen as a perfect whole ear lobe.  When people approach to look at it closely, they chuckle when I say, "This is my one good ear".  I have a sense of humor and joy.  What else is left?

I looked all over the web for better and nicer symbols, but could only find the lapel pin from ANA.

[Gennysmom]

Static was nice enough to give me a lapel button, which is actually quite large, and I am wearing it at work today.  I have to use my ipod to check out at work because the ambient noise chatter is too great...and it seems like people get pissed when I do that, like "who do you think you are to wear your ipod at work".  It keeps me focused though.  It seems like if people can't see it, then you must not have a disability, that I'm living the life of luxury listening to my ipod at work.  I'll let you all know how the pin works. 

I also work with files all day long, and part of that is pulling/returning them to their place, and our files are all 36" and below, and I hate dealing with them, and I know if I ask to have that removed from my duty, that everyone will label me as "lazy".  I got out of it right after surgery, but now there's no excuse other than I'm not  comfortable. 

It's definitely hard to fight the battle within yourself as well, to try to live up to what you used to be able to do.