for people who don't feel that they DESERVE disability....

Discussion in 'Fibromyalgia Main Forum' started by camelgirl, Feb 23, 2003.

  1. camelgirl

    camelgirl New Member

    This was mentioned in a different post, but nink said she thought it should be discussed and i agree...i am on disability for kidney disease...i go to dialyisis 3*/wk, but i look "healthy" or "fine" or any of those other annoying words people say sometimes which even makes me feel like i don't deserve it. i understand this feeling, but we have to remember that it's just not true....we are SICK!! whether the rest of the world knows or cares doesn't really matter....we need all the help we can get to deal with these dd' please don't feel that you are undeserving of any assistance that is out there...take full advantage of disability and especially this wonderful board where we can come and vent and talk about things like this...everyone have a good day, ok
    peace, hugs, god bless, camelgirl
  2. camelgirl

    camelgirl New Member

    I just feel this is really i the only one?
    peace, hugs, camelgirl
  3. Mikie

    Mikie Moderator

    It is insurance we all pay into in case, through no fault of our own, we cannot continue to work due to injury or illness. Whatever causes our inability to work needn't be readily obvious to the casual observer. Anyone making any remarks about this is ignorant at best and mean and insensitive at worst. None of us need respond to anyone commenting on our deserving disability benefits. We have bigger fish to fry than to worry about what others think.

    Love, Mikie
  4. jslady

    jslady New Member

    I worked at a hospital in accounting. Saw many people with disabilites, that made me feel guilty for trying for ssd.
    I have all the bad symptoms of Fibro, but dr has dx w/EBV,
    IBS,Parvo and now CFS. I missed being dx w/fibro by 3 points on the body. I see an infecious disease dr next month and hope he can help find the other infection strolling around in my body. SSD recently denied my claim, dr says I should appeal. When others with more problems than I are denied, I have to wonder if it's all worth it.
    We lost half our income when I quit work, is another quilt trip I put on myself. I just want to get back to normal. Sound familiar? Dr. and hubby say I'm in denial.*hugs* JSL
  5. camelgirl

    camelgirl New Member

    no one on this board said that we don't deserve disability, someone mentioned in a different post that THEY felt that they didn't deserve it. nink responded and said she felt this topic should be discussed and I agreed. I am only trying to offer encouragement to those of us who sometimes get frustrated about this. I hope my original post was clear about that. sorry for any confusion:)
    peace, hugs, god bless, camelgirl
  6. jslady

    jslady New Member

    "could you work and support yourself?" was a question I had to think about. I'm not alert or steady when I wake in the morning. It takes all morning for me to get presentable for any job. Then I'm so tired, I rest for an hour. Fix lunch, feed the birds and I'm back resting in the afternoon. I try to do something (laundry, dishes,dust)
    after this rest and then fix supper and talk with hubby. We watch Tv and go to bed. Exciting routine, I know. I guess what I'm getting at is, I felt I was able to do things here at home that maybe I wasn't as bad as I thought. I have concentrated on what I can do and not what I've failed to do. It important to view this dd from all sides. Thanks for making me take notice (and write down) what a day in my life is like now. I must have been in denial or I would have known I couldn't get to work on time, let alone do work! All of your comments were appreciated. I'll see what today brings. *hugs* to all.
  7. Beth37

    Beth37 New Member

    I am waiting for my hearing date for disability.I have alot trouble dealing with guilt,thinking I should be out there working.If I have a pretty good day or days,I feel guilty thinking I could go to work,even though I know that I am not cured.That I have alot of symtoms other that the pain that are keeping me from working.Does anyone else feel the guilt alot.I know I sure do.Beth
  8. jslady

    jslady New Member

    Well said Beth37. In the past, I'd go back to work as soon as I could after a bout of flu, etc. So on my good days, I feel I should be working to help pay bills. There has been a lot of good info given on this subject. I've paid into the system for 30 years and will appeal my denial from SSD,
    thanks to several people for their opinions. JsL
  9. camelgirl

    camelgirl New Member

    for explaining what i was trying to say in a way people can understand...i'm not so good with words anymore, but you always seem to get the point across, leaving little or no room for argument...good job and thanks again for the help.
    peace,hugs,god bless, camelgirl
  10. dizzydonna1212

    dizzydonna1212 New Member

    Hi JSL,
    I am knew to this board. I,ve had fm/cfid/me for 20yrs.
    Was dxd2yrs ago after work injury and had major flare. Whatever you do DO NOT give up. APPEAL-APPEAL-APPEAL!!
    You are too sick to work.

    I assume you have an attny. If he is not doing his job, fire him. If you don't take care of yourself who will ?

    Take care of you!

    (((((GENTLE HUGS)))))
  11. Sandyz

    Sandyz New Member

    Thank you for your post. It was good and something I need to hear often. I too have a lot of guilt with not being able to do the things I used to and feeling maybe I don`t deserve disability. I haven`t even started the process yet even though I know I need to because I can`t hardly function anymore. Many of us are struggling with very difficult doctors who act like we`re not really ill. I know the doctors I go to would not want to help me get disability. They tell me I should be working and I would feel better.

    It was a good post because many of us need some validation sometimes. Hope all goes well with your dialyisis.
  12. Bambi

    Bambi New Member

    but like some in my age group, I chose to stay home and raise my child instead of joining the work force. I
    was berated by other women the whole
    time for not "working" ie: "How do you stand being home all the time?" "Don't you want a paycheck of your own?" "What DO you DO all day?" etc.. I just ignored it because I really did feel my "job" was important. After that I made a job of my home, making it as nice and comfortable for us as I could. Now I don't qualify for disability though, so once again I am told my chosen "job" was worthless. In my mother's time it was
    just the opposite. She was berated for working and leaving her child. My
    grandmother lived with us so I wasn't
    "left". I think women have always been hard on each other no matter what choices they made and on themselves.
  13. camelgirl

    camelgirl New Member

    i guess you could say that i do...i've lived away from home for more than 7 years, i work, i drive myself to and from dialysis, i take care of myself in basically every way...i do have my mom and sis who live close by, and they try to be supportive, but they don't realize how much the "you'd feel better if you did more", or "i get that too" kind of stuff actually makes me feel worse instead of better....that's where this board comes is exactly what is needed when there is NOBODY around who GETS IT...even when they say they do.
    peace, hugs, god bless, camelgirl
    p.s. thanks for everybody's input on this:)
  14. azcrum

    azcrum New Member

    No one should ever feel guilty about being sick and taking money that is rightfully theirs. That's what it's there for. The most frustrating thing about have this is people do look at you and think you are fine. Most of the time I don't let it bother me. I am currently patiently waiting to get my SS approved. It's been almost 2 years but my lawyer is confident we will get it. And, I don't feel the least bit guilty. Plus, you are right about this site. It is such a good place to vent and share stories with. All of you understand. Thank you to everyone!!!
  15. azcrum

    azcrum New Member

    I am going thru exactly what you are right now. SS and fibro just don't seem to go together very well. Hang in there though. My attorney is confident I will get it sooner or later. I was told I could do light activities. Yeah right. I take meds that affect my memory. And I am in a fog alot. Who in there right mind would want me working for them. Frustrating, yes. Impossible, No. I will pray for everyone on here who is fighting with SS. We need it and deserve it. Good Luck and don't quit.
  16. azcrum

    azcrum New Member

    Your post was perfectly clear to me. Not to worry. :)
  17. azcrum

    azcrum New Member

    What a great post. I remember "those" days. Even just sitting here reading it makes me tired. Thanks for sharing that, it made alot of sense.
  18. Zappedme

    Zappedme New Member

    To CrazyVickie,

    If your Atty DOESN'T specialize in getting people on disability, please get one. Or, find a good one.

    I found out that the 'board' of judges aren't doctors ~ just business people. Therefore, we have to convince them that each problem causes us to not be able to work.

    It's a very good idea to talk to a doctor you've been to & who is treating you for the reasons you can't work & have that doctor write a letter for you to give to the 'board.' This is something you don't need but it should help a lot.


    *I just reread your post. High blood pressure & problems with your thyroid ~ either hyper or hypo ~ would NOT keep you from working because they're both treatable. I'd take those out altogether. [This Message was Edited on 03/01/2003]
  19. Zappedme

    Zappedme New Member


    I've been on disability since 91. I felt extremely guilty until around 97. I have chronic fatigue & fibromyaligia but I'm on disability for 'major episodes of recurring depression & panic disorder.'

    My Case Worker kept telling me that I needed to start having fun everyday & I did. She called me at 10am one morning & I was crying. When she asked why the tears, I said, "I've been having too much fun" & she was hysterical.

    If you would or do miss one day or more a week from work, that means that you can't count on yourself to show up on a daily basis. This isn't bad. What I mean is that I'd feel more guilty if I had to worry about whether I should go to work each day or not.

    You really need to stay home & take care of yourself. Exclude the words 'should' & 'shouldn't' from your vocabulary.

    Like a fibro friend told me: DON'T JUST DO SOMETHING ~ SIT THERE.
  20. Sandyz

    Sandyz New Member

    I too am a stay at home mom and get a lot of negative comments about that also. As if all the comments about the Fm and not working aren`t enough. It`s a double whammy of critism. I`ve had of few women tell me I was being lazy not working outside the home. It really ticks me off that people can`t just keep their mouth shut and let me do what I feel is right for me and my family. I sure don`t critize them for their choice to work.

    I agree with you that things have done a complete flip-flop from our mothers time. No one would have ever thought them lazy for being homemakers.

    We just can`t win!
    [This Message was Edited on 03/01/2003]