Family pressure to get off disability and work

Discussion in 'Fibromyalgia Main Forum' started by vegansf, Feb 25, 2003.

  1. vegansf

    vegansf New Member

    Hi. I have CFIDS and FM-or something more like rheumatoid arthritis. I also suffer from depression and panic attacks. I've been on disability for 10 years and am SO frustrated because I could -and would like to- work a part time job. But, I can't because then I'll lose my benefits.

    My family just took away all it's financial support, putting me in a `sink or swim' situation, thinking that this will force me to get a job, get off disability...and that this will help my self-esteem and actually make me feel better in the long run.

    I'm So damn angry with them, and so tired of explaining why I refuse to give up the only stable income/health insurance I have...and that my illness may not be bad all the time...but sometimes it IS too bad to work.

    Please...any advice... How can I explain to my family that doing any old job WON'T be good for my self-esteem...and isn't the answer to curing me of CFIDS? Also, why I need to keep the cushion of support disability benefits give me?

    One upset girl

  2. blondieangel

    blondieangel New Member

    you are on SSD...things have changed in the past 10 years!

    You CAN work part time. Just can't bring in over $700 (may have gone up to $800)a month! Check their website!

    Also, if you ever recover enough to want to try to work full time, you can have a 6 month trial period.

    Good Luck, and welcome to the group!
  3. vegansf

    vegansf New Member

    I went to a seminar re: disability and benefits, and the lawyers said that's not true. They said I can get $120 a month, and after that my insurance goes away (I have VERY low disability payments since I never worked).

    Also, apparently Bush took away the 6-9 month trial period.

    Regardless, I find it so insulting that my family would just yank out support, and force me into such a precarious situation-when they know nothing about disability or my need to keep the health insurance. And even working part time I'd need to do something super flexible...hard to find when you're in SF-city of unemployment.
  4. victoria

    victoria New Member

    The rules HAVE changed! You have an initial 9 month period in which you can make anything - no limits - without your benefits being withdrawn. Last year it was $780/mo that you could make without losing benefits - I think it goes up each year.

    AND, If you do make more than the monthly amount allowed after that 9 month period, you have about 5 years during which you can immediately go back on SSD -- WITHOUT another hearing -- if you found you couldn't work due to your disability. Contact your local SS disability office and make an appointment to talk with them in person.

    My husband's on SS disability, and is now working part-time. Unfortunately, I worked off the books for most of my life with him in his business, so don't qualify for disability at all.
  5. victoria

    victoria New Member

    Instead of Social Security Disability? that may be the difference?!
  6. blondieangel

    blondieangel New Member

    You're in CA like me, and I just went though the 2 yr. ordeal to get SSD w/ an attorney, so I have all the info in pamphlets, and it's on the SSD I am confused?

    What type of 'insurance' do you mean?

    BTW - I (along w/ MANY on this group) receive little if any emotional support from family, so you are not alone! Just look though some old posts!;-) NEVER have received any $$$ (financial support), and I've been independant since age 17. Fill in your bio some time if you get a chance - how old are you? Married? What is the nature of your disabilities? Do you live w/ family? What members? Why are they on your case?
    [This Message was Edited on 02/25/2003]
  7. vegansf

    vegansf New Member

    I'm on I'd lose Medi-Cal etc.
  8. blondieangel

    blondieangel New Member

    That's what I figured! If you are low income (under a certain amout of $$$) you will not lose your ins. Have you checked to see what the limit is? I had Medi-cal and Food Stamps for awhile while in College and waitressing to support myself.

    I know your can't have over $1200 in the bank at any time...that much I know because I share responsibility for my disabled, unmarried aunt.

    I was going to mention voulenteer work too...Nursing Homes are in desperate need!!!!!![This Message was Edited on 02/25/2003]
  9. vegansf

    vegansf New Member

    They gave me a formula to figure out how much I could make...and it came out to $120 a month. I questioned them, and they said `yes'...and they are disability lawyers.
  10. vegansf

    vegansf New Member

    That's where they think the self-esteem comes in.
  11. blondieangel

    blondieangel New Member

    aren't you? Your finances just happen to come from Disability, because you are ill...I am guessing, do you live w/ your parents?
  12. vegansf

    vegansf New Member

    I get $735 a month on disability - and live in San Francisco. The money barely covers rent...and that's with two roommates.
  13. blondieangel

    blondieangel New Member

    You ARE SO self-sufficient! Ignore whomever in your family is being so thoughtless of your feelings! How dare they!?
    They are not in your body!

    I know how much we all want to be validated by family...but sometimes they can be the most cruel of all:-(

    Just talk to all the new friends you'll make here...WE UNDERSTAND!


    opps, forgot...i guess someone is HELPING you then, financially...maybe they need to have the doctor explain what would happen if you were to work full you'd miss the 2nd day on - due to exhaustion...etc...and/or send the 'Letter To Normals':)[This Message was Edited on 02/25/2003]
  14. vegansf

    vegansf New Member

    Where? Did someone write a letter to all the family members who TOTALLY don't get it...but try to tell you what to do anyway???? Do you know where I can see the `letter to normals'?

    God (figure of speech) help us if my family is considered `normal' ;)
  15. toots2

    toots2 New Member

    I know how angry and hurt this must make you. I am so very sorry your family doesn't understand the profound effect your illness has on your ability to work. I know I could not work if I wanted to with being so tired and hurting most of the time. They probably think like most people that because you look good, you feel good. They have no idea! Your family has not one clue as to how you feel not to mention what you need to boost your self esteem. I wish they could talk to your dr., or that someone you know who is knowledgeable about your condition could explain to them just how it affects you. Print them out some material or have them do a search on their computers. Better yet, have them check out the information here and what others have to say about how they feel. They do not have your best interests at heart even though they think they do. It probably has more to do with the "work" thing than your health, like you have to work or be considered lazy. I'm sorry they have withdrawn their support and hope you and your family somehow resolve this; they can find out just how disabilitating these conditions are and start helping again. It's bad enough worrying about them but now you have the stress of having to worry about money. I do hope something works out for you. Toots
  16. azcrum

    azcrum New Member

    It's hard for people to even know what we go thru with this. My husband and I have been thru it. But, he supports me. Let your family read some of these messages on here randomly. They could get a better understanding maybe by seeing how it differs really from person to person and the pain that is involved. I am glad your on ssi. That really helps. I have been turned away. So good luck.
  17. blondieangel

    blondieangel New Member

    Just go to the fibrohugs site. We can't give out web addresses here, but I'm sure you'll figure it out!

    Had a Amy's (frozen) veggie loaf dinner tonight!
  18. sofy

    sofy New Member

    The key to your message was "Ican work part time". This probably has a lot to do with the withdrawl of family support. Support means someone else IS working to meet your xtra needs. Perhaps they really do fear your are in a safe cage and afraid to open the door and come out because of fear. If you are young you probably have never developed skill on how to be independent. I would make an appt with the offices that are responsible for giving you your monthly checks and then ask if there are any programs to help you see if you could be trained for a job that your disab. could handle and try it part time without loosing benefits. Get it in writing-they should have a pamphlet.
    I would be careful handing family members copies of "The Thief of Many Lives". Victim is one of the first words and the rest just amplifies VICTIM. Those who are not sick might read this and see "Reinforcement to be a Victim Forever". That is not the message you want your family to get. Healing is multi faceted and to be able to do the slightest thing for myself that I couldnt do yesterday is the most powerful medecine there is. Protect you safety net but do try and expand your world cuz you might find its to your liking. For myself (I'm older) I've had many changes. Some I went kicking and screaming to but in the end when I quit fighting and looked around they were always more positive than negative. I wish you an exhilerating adventure of life and living.
  19. vegansf

    vegansf New Member

    THe working part time STILL would barely cover food etc., and because I am on SSDI I would lose MediCaid. I would not be able to make ends meet unless I became a sex worker...and don't think I haven't done research into that! Ugh! The support they're taking away isn't frivolous's literally money that keeps me alive.
    Just the stress of all this has made me barely functional-I can't sleep and I'm having panic attacks all the time.

    Also, I would need the most super flexible job...and as I said, SF has such high unemployment, I just haven't been able to find it.

    There's also the point that Scott Davis made...that if I get off disability and try to work...and fail, the judges often are prejudice against you when you try to get back on disability.

    I understand that being pushed can be a good thing. But I need to be pushed to meditate and do things to make my system stronger, not things that will cause me this amount of stress.

    Thank you for pointing out the `victim' role-THAT is something I definitely want to avoid with my family.
  20. sofy

    sofy New Member

    Getting angry at the family wont help. Get your facts about insurance costs, keeping and jeopardizing state health ins. etc and then call a family meeting to help you make a plan. Or you could make an appt with the check people and take a family member with you to help get all the facts staight. If you make them part of solving the problem then you might not be at opposite ends but going together towards the same goal. If you absolutely cannot get a paying job without losing health ins. then the economics might really be that you could not work enough hrs. to make up for the disability check and ins. costs. You would be in a deficite. They need to see thatin black and white. There are still other options. Go to the dog park, make friends with one of the employed and perhaps you could start walking a dog for cash. How about cleaning a working persons apt. once a month or once a week for cash. Probably lots of other things you and your family could think of that might get you started off in a small way. If nothing else at least your family will feel that you are trying. Good luck