I can barely see to type so itf i mess up, sorryr!  Of course people with disablities dont' look or act the same. that is just SILLY!  You can not let that kind of comment get yuou down.  And as for YOU!  Maybe you are a ;ittl;e too caught tup in "beinhg disabiled"-what do you think??? whateever, don['t worry one little bit what othets say.

I'm disabled, too, with ligament insufficiency in my ankles; left leg shorter than the other; severe scoliosis, et cetera.  I have SLE, Systemic Lupus Erythematosus; fibromyalgia.  My friends know I am disabled so they don't make any comments.  The paramedics came to my house, I met them at the door.  When they got in the house, they said, "You don't look sick.  Why did you call us?"  I couldn't actually tell them why I called them because I was so angry, I just said "I don't know.  I just don't feel well."  That probably didn't set too well with them, but I just had to say something back at them.  I wish people would be more sympathetic, but when or if they get old enough to have problems and people talk to them the way they do, they'll realize, hopefully, that that isn't good.  I am sorry you have to go through this, too. 

I can relate.  I have no idea what people expect it to look like.  When I first became disabled, for mental illness, which no one could and still can't "see"--- meds can do a great job for me in making me look "normal"--- I had to prove myself so at certain points in my life (over the course of maybe 14 years), I gave up things such as my license to prove I was a danger to others if I drove because of the heavy medication I'm on (and at first when no one believed me I got in some accidents because the meds messed me up added to anxiety, finally getting people to agree with me they were glad I wasn't driving) and I'd driven for 11 years without a problem; i now come out and say I am on SSDI (rather than unemployed) for mental illness, my diagnosis, and with many meds which make me unable to work, so endless questions dont happen as to why I don't work...things like that, all because I don't "look" disabled.  I find I have to prove I am disabled mentally becasue I don''t look it, more in the beginning than now though.  I tried to work once which didn't work out, ended up in multiple hospital psych unit stays etc before most people believed me.  So I don't know what people expect us to "look" like.  Great Post.

Melissa.

Hillary:::  Maybe I am caught up in being disabled, because that is what I am.. Does it bug me, you bet because until as recent as 2 yrs ago I was strong, felt I could outwork any man,( and a lot of times did) I could run and play with the kids, play volleyball and all that..  Then I had only the Fibromylgia and it wasnt too bad, yes there was pain, muscle weakness and all that but I was still able to work.. Over the past 2 yrs other physical ailments have started making it very painful to do even the simplest of tasks...  I mopped the kitchen floor yesterday (a very small kitchen I might add) and my arms and shoulders hurt so bad I just wanted to scream...  

Time traveler and melissaw72: thanks for the comments and the understanding. It does drive me crazy when people say we should look disabled... Yes I can expect it from total strangers, but my own brother made the comment that all I do is lay on my lazy butt now.  I had told him he needed to get a job if he wanted to continue to live with me.. Needless to say he is not here anymore... But anyway that is a whole other issue...     

Along with the pain is the awful depression, and the not wanting to leave the house... I hate it.  I cant even go see my mom who just lives right down the street.. I feel so awful about that especially since my dad died 4 months ago, they were together 54 yrs and I know she needs us. But I cant bring myself to get up and go... I have no willpower or energy or motivation any longer... I just lay here on this bed day in and day out.. Sometimes I muster up the strength to get some housework done but it hurts.   I dont want to see anyone, I dont want to do anything...  Of course there is no one to see anyway other than family.

I guess that is enough, I know people dont want to hear it....

I am not disabled but I can relate because I have R.A., fibro, depression etc. Even my closest friends with medical backgrounds don't "get it" and if they don't, no one will. I think uness people are going through it, they can't or won't understand. I have given up trying to explain the fatigue/pain issues to people. To the people who told you to get off your ass....tell them they have no right to judge you.

Hi:

I sometimes have an issue with my brother and sister-in-law not understanding.  Like when I had to wear my mask when I went back to Maryland.  I felt very uncomfortable in doing so because when we went out to CVS, I wore it and my sister-in-law said something like "Do you have to wear the mask?"  I told her the doctor said to because six days earlier, I had just gotten out of the hospital with pneumonia.  That was the only way he would allow me to travel.  I was upset because I felt she thought I was doing it for attention.  I didn't even discuss it anymore with her.  Sometimes it's better if I keep my mouth shut.  Anyway, it's very hard for me to tell people that I can't go anywhere because they just don't understand.  So, keep writing.  I, who have medical issues, would LOVE to keep hearing from you.  Have an awesometacular day.  That's my niece's word.  Pretty cool, huh?

I know exactly what you mean!! I have many severe disabilities. The worst being Osteogenesis Imperfecta and Osteoporosis. I am only 20.  I also have a hearing loss and asthma.  It can be impossible to navigate everything you need to do as far as work or school etc and still get your medical needs taken care of.  I feel as though people expect people with disabilities to " look" stereotypically disabled with a crutches or a wheelchair. Using Sign Language, or a seeing eye dog. I feel as though our society uses these as markers for a definition of disability, when in reality a disability can come in so many shapes and sizes and forms. I was not diagnosed with my osteogenesis Imperfecta or my Osteoporosis until this last January all though I had the OI through out my entire life.  I broke bones really easily and no one could figure out why until someone bothered to take a close look.  Eventually those diagnosises lead to others, and now I know everything that goes on with me, but still I feel as though a lot of the time people are suprised when I tell them I am disabled. So yeah I know where your coming from and I don't really think there is a good answer to your question, beyond that there is a stereotype associated with being disabled and that is what I believe most people assume people need to be in order to be disabled.

  Brianna

I too suffer with the same diabilities and actually today is a really bad day I cant even walk. Not sure what I am going to do. I say anything that impares your daily life is a disability. I also have a daughter who is Autistic and also has a siezure disorder she certainly is dsiabled and with the challenges that come with careing fo her I feel like my body is just falling apart daily pain even with meds though I am trying to stay away from narcotics for the pain I am running out of options. I feel like I cant be the mom my girls deserve because of the pain.

Everyone here has written BEAUTIFUL POSTS TO YOU J.

Also people who know you,  and what you went threw in your family of origin,  as well as now ....know you have a whole bunch of stuff which is truly real....and each thing YOU ......YES YOU should be proud of yourself too girl BECAUSE I AM PROUD OF YOU>>>>>> OK!!!

(and)

 Sweetheart you over the past 2 months have grown and accomplished ALOT all by yourself. All that you ever looked for was true friendships from D P D B....You dont want to fight with anyone....LORD KNOWS YOU AND ME in out childhoood have had enough of that to last our whole lifetime right?

From today forward PLEASE>>>>>> Look at each day as a blessing from OUR HEAVENLY FATHER who only gives you what you can handle in any 24 hour periods of time. He didnt pull you out of the gutter to leave you sitting on the curb.  GOD ALMIGHTY HAS SUCH WONDERFUL GREAT PLANS FOR YOU HIS SPECIAL DAUGHTER NOW ALL YOU HAVE TO DO IS BELIEVE THIS AND ME OK!

I PRAY NOW DR PHIL MAYBE EVEN THE DRS HERE would fly you out to CALIFORNIA AND step in some how and help you and your life because you are deserving.

PRAYERS WILL BE SAID IN AM/PM for you and your Children and Grand Babies.  Please keep Tommy in yours..

xox

JWL,

No Willpower? Motivation? Energy?  It takes that and more to come on a site and tell people you don't know your fears, your anxiety, your feelings.  You are on here, talking with many people who *understand* and are behind you in your battle.  "Chin up!"  I used to love that saying from "Charlotte's Web".  And don't let those few people who are ignorant or themselves fearful to/of disabilities drag you to their level. 

Take baby steps and this includes seeing your family..... one day at a time, one step at a time.  We're here if and when you need to vent.