43 thoughts on “Disability Benefits. Do you receive any disability payments for your health conditions? Now with over 40 new stories added”

1. I was diagnosed with MS in early 90’s remitting relapsing now stage 2 secondary. Use a walker and cannot do the things I used to.
   My husband is self employed with no health benefits. I was finally approved for Trillium funding for prescriptions, but too little too late!
   I have been approved for CPP disability but turned down for Federal as they say my spouse makes too much money! Ha!
   Two kids in Rep Hockey and Competitive Dance, how do I tell them now we can’t really afford either. They have been part of it since they were 5 and 7 now 12 and 15! With a mom that can’t work!
   A little Federal compensation would have been a huge asset!
   I go without so my kids can enjoy what they do!
   Most days I live in brain fog, can’t walk let alone be reliable enough to get a job as fatigue is my best friend!
   If anyone has any suggestions I would greatly appreciate them! Thank you!

2. Kkgmudryk Hi Dont know if you got the last message I just wrote as I may have pressed the wrong key but I just wanted to thank you for taking the time out to reply to my comment, I am sorry it has taken so long to reply but as I said in the last message ? (where ever it went ??) I have not been too good for the last few day’s have been very tired and my eye’s have been so very sore, stinging and watering all the time as well as bad headaches and aching all over but when I go to bed at night I can not sleep !!!! hope you get this message babe x

3. Hi Shirley
   I’m newer to this group as well and have found it helpful.
   In regards to your post about medications ..
   I’m located in Canada first off. I am on a ton of medications. Can’t even count. I have coverage, 80% of the prescription. Even with that, I’m still spending 100’s a month. It’s ridiculous. There are some meds that are just to expensive so I talked to my Dr about it and she gives me samples.
   It sucks because it takes away from monthly income. Which I barely have as I’m on disability.
   I would ask your Dr for samples. Mine has also has given me ” cards” from the drug companies that allow you to get the brand name drug for the cost of generic. You just bring them into the pharmacy.
   I don’t think there’s much that you can do especially since you need the medications.
   Hope this helps and good luck!

4. Hi, I have just recently come across your page and am finding it very helpful, I was diagnosed with Fibromyalgia in 2014 but the previous year was diagnosed with Polymyositis which I am still undergoing treatment for, I have been given a new drug to try (Azathioprine) they say this will help the pain and I will be able to reduce my steroids( this I was thankful for as my cloths are now all to small for me ) however I have been on these new drugs now for 14 weeks and there does not seem to be any difference apart from being more fatigued and gaining more weight?? I have to go to hospital every 2 weeks for blood tests in case the Azathioprine is affecting any other organs (thankfully up to now all is ok).  My Husband has been wonderful and works all the overtime he can to boost our savings as the amount of DLA I recieve is low and I even have to pay for my own prescriptions?? I am on 9 different meds daily and each one costs £ 8.16 per item  every month this comes to nearly £50 a month so how can they tell me that my illness is not eligable for free scripts ???.
   Sorry if it looks like I am ranting on but I felt the need too. Thank you for your page it is very helpful and it is good to know that there are others feeling the same as me and it’s not  all in my mind  xxxx

5. I agree on this! But I do also understand why it is so hard to receive benefits. If it was easy, everyone would abuse.
   Very frustrating as all of my illnesses can not be seen. Unless I just look totally like crap from exhaustion and pain ( which is more often then id like)
   My spouse is military, and they have a disability benefit. I tried enquiring about it and spoke to someone on the base and they said it’s probably one of the hardest benefits to receive. It’s not a monthly thing, it is a 1 time payout (6 figures) and that’s it. This woman that I spoke with, she said she’s been doing her job for like 20+ years and have seen soooo many people try for it and get declined. She told me of a woman that had MS who was wheelchair bound. Could not walk. Couldn’t go to the bathroom without help. It was bad. And she got declined!
   It’s so frustrating because we are already dealing with all the crap of being I’ll and the emotions and then to add the stress of finances. It almost feels like too much at times.
   I guess all I can say is to keep trying…
   When I finally got approved … I bawled and bawled. I couldn’t stop. All I could say was ” someone finally listened”

6. Hi there.
   I am in canada as well. I’m just wondering what exactly did you apply for? Is it LTD benefits through your work or CPP disability benefits?

7. Can totally relate! Would love to chat more with you if possible … We have some similarities and love meeting new ppl that can understand me.

8. Hi, I receive cpp.  I just wanted to get some things of my chest.  Life is hard enough with out having medical problems.  I have M.S.  I know all the tax breaks but I’m tired as I went from  a good paying job with goals and dreams.  And was getting things done. Life was good I just divorced 9 years before my world came to an end.  I had just finished paying his bills off and was planning on buying a house , I had been to the bank and was so happy.  Then M.S. struck I lost my job and my hopes and dreams went up in smoke.  Now here I am trying to live on my $843. a month , its hard .  Now I’m depressed and broke . So it’s been 16 years for me being broke and depressed and I even get up set when I see people shopping and laughing and driving cars and going on vacation.  Cause I got punished for getting M.S.  it’s not right ,  I think we should be getting enough to live. Welfare lady up the road has it all a car goes on vac.  etc.   Well I want a car and I want to go shopping and I want to go out for dinner.  I’m tried of counting pennies.  2 days ago I cut my hair in the bathroom cause i didn’t have the money.   But the goverment don’t care.  OK I’ve done my time I want to live and enjoy life not count the days till I get my CPP.  $843. God I hope you are listening.

9. I receive Social Security Disability.  After leaving my last job, it was getting very difficult for me, I decided to apply.  I filed online and never had to go into the office.  Had a couple of phone calls and a physical and and five months was approved.  I have had arthritic knees for over 25 years but with over the counter anti-inflammatories I kept it somewhat under control.  I then developed degenerative joint disease in both of my thumbs and was also diagnosed with dupetryene’s disease to both hands.  I was diagnosed with thyroid disease at age 16 and was diagnosed with anemia after the birth of my second child 41 years ago.  At one point I was hospitalized and received two units of whole blood because my hemoglobin was 4.7 even though my body was functioning somewhat normally.  After a year of tests and receiving iron infusions the doctors got my levels to somewhat normal but still needed to take three iron suppliments a day.  At age 55 I was sent to see a rhuematologist because I had full blown osteoporosis.  He was the one that actually diagnosed my Celiac Disease.  I have had the thumb joints to both of my hands rebuilt and just recently received a total knee replacement to my right knee.  My hands are getting worse as the arthritis has hit them badly.  I am now taking Celebrex which helps immensely.  I am also fatigued all of the time.
   I do not know what more information you would need.  But this is my story.

10. I have a severe and aggressive form of Crohn’s Disease and when I could no longer work 5 years ago, I applied for SSD with the help of a well known lawyer. I was approved within 3 months. Now I just got my 5 year review, which is now done by an outside agency. They have determined, based on “reports” from my PCP and Specialist, that I am cured and my SSD will stop next month. I immediately dug into what little I have left in my savings and retained the same lawyer. He sent me to my local Social Security office to file an appeal and request my benefits continue during the process. After spending all day there, I finally got to my caseworker, who spent an hour with me taking my info while constantly falling asleep. I then went to both of my doctors and lo and behold neither was contacted by Social Security nor sent any reports in. My lawyer is waiting for the supposed report, but has not received anything yet. This review was full of blatant lies! Besides, there is no cure for Crohn’s. I am 50 and have had it since I was 19, have undergone 13 massive surgeries including 2 on my larynx where the Crohn’s has spread (very rare). Most of my colon, half of my small intestines, my gall bladder, appendix, a falopian tube and much of the muscle mass in my upper right leg have all been removed. I am constantly in the hospital. I will be in there again Wed for the first of 3 iron and blood transfusions. I spend most days in bed sleeping, in pain and living on a high dose of Percocet, in addition to the other 32 pills I take every day. Treating sick people this way is a travesty, and once it is (hopefully) resolved, I plan to take legal action against this new outside agency. For me and everyone else they are screwing over and fabricating reports about. SSD is my ONLY income and my stress is through the roof because of this, which is only making me sicker! But something has to be done about this. If anyone else is having similar problems and reviews with false reports and are interested in taking legal action, contact me at maryjosimunovich@gmail.com.

11. TonyAyers May I ask, how did you find out about being able to earn & how much in the state of Florida?

12. I do not receive anything at this time. Stress being a big problem at work will get me someday, but I take my medications, and hope I can stay healthy as long as possible. I was told by a friend who files SSI and Disability claims, I’d need to start thinking about applying around the age of 55. Also, in the state of FL you can earn up to $1,000 while receiving Disability. The benefits will not be enough to live on, so I’d have to find something flexible enough to supplement my income. It’s very important to keep moving when you have MS, even if its wheeling yourself to the local Publix. We must keep on keeping on………………

13. It was hard work initially had to appeal their decision. Though have been given the lower amount. Actually in the process of filling out another form so will be interesting to see the outcome as its due to end in July this year. Its a real shame we have to fight for this.

14. DixieMileyFrederick yes I just got the same response, we are going to try an On The Record Review since I have new information for Neuro Rehab and Neuro Psych.

15. I was denied the first time. I appealed, denied. Appealed again, denied. I got a lawyer, denied. Was told I’m young enough to learn a new trade. And that my autoimmune diseases were not disabling enough. Went to trade school before I applied the first time. No job and unpaid student loans is what I got. Appealed judges denial with a lawyers doing, he dropped me due to student loans. Wasted 6yrs of my life. Can’t apply now because I haven’t worked in over 10yrs. Thanx government.

16. I was denied the first time. I appealed, denied. Appealed again, denied. I got a lawyer, denied. Was told I’m young enough to learn a new trade. And my autoimmune diseases were notDid that before I applied the first time. No job and unpaid student loans. Appealed judges denial with a lawyers doing, he dropped me due to student loans. Wasted 6yrs of my life. Can’t apply now because I haven’t worked in over 10yrs. Thanx government.

17. I was denied the first time. I appealed, denied. Appealed again, denied. I got a lawyer, denied. Was told I’m young enough to learn a new trade. Did that before I applied the first time. No job and unpaid student loans. Appealed judges denial with a lawyers doing, he dropped me due to student loans. Wasted 6yrs of my life. Can’t apply now because I haven’t worked in over 10yrs. Thanx government.

18. i live in New Zealand and our application process is simple.  our local work and income office (where people recieve a benefit when they cant work or due to age/injury you cant bring in enough money to live on etc) gives us a form to take to the specialist to sign off, then we provide evidence of the condition (notes) or they call to confirm that everything is legit.  i went in on thursday afternoon and by that night it was approved and arrears paid and in my account.  i will recieve $91.33 every tuesday fortnight (every second week) and it pays for whatever is needed…trips to specialist appointments, medicines if needed, anything extra you need to buy for their disability…etc. it is really helpful but there is a certain criteria to meet but as my daughter is low functioning she fit into it.  every few years it gets reviewed so they send you the form again for the specialist to sign off on again to say “so and so still has such and such disability with little or minimal improvement”. i also have one for my son who was born with a club foot. helps with extra trips to the hospital for him and the crazy amount of shoes we have to buy him every year.  
    good luck to everyone that applies though, wherever in the world you are 🙂

19. The typical process of application is that nearly everyone is rejected the first time they apply.  However to be approved on appeal, you usually have to have a lawyer.  Now your first check will be for all the months since you could not work.  That lawyer will take his fee of 1/3rd of that nice big check.  From then on you get ONE little check per month, which you are supposed to live on!  Usually you need a lawyer to win your disability hearing.  And that first big check goes to the lawyers office, not you!  You get those bitsy monthly checks starting month 2 after you are court approved.

20. I was turned down the first time and did an appeal in Nov 2013, just called them and they are telling me it can take 15 months! That is awful what are we to do with no money coming in? Does anyone else have this issue?

21. In Russia I get $200 from State. Walking with cane not more then 400 meters.
    Because of corruption there are a lot of fake invalids in Russia, who get money from State.

22. Get a lawyer before you even start – they will prevent you from making mistakes that can hurt your claim. Also get a doctor that will work FOR you and not against you. Mine basically said I was just “nuts” and that was the end of my 3 year fight for help. His assessment was based on the fact I wanted to be an informed patient and would not just “do” whatever/whenever he wanted without asking too many questions. Also if you have a court date try to look like shit that day and act very slow/tired – I just looked too “normal”.

23. For autism? For a child? I don’t think children can get SSD. If you are extremely poor you can get SSI up to about $700

24. I went to vocational rehabilitation and they said i needed to apply for ssd. I was approved.

25. No I was denied and appealed and was denied I have been waiting 30 months now for an administrative law judge hearing for me. I have a heart that pumps at 20% with a bad LAD artery, seizure disorder and no use of left foot
    My son does not receive either and he has autism (non verbal), SPD (sensory processing disorder), ODD (oppositional defiant disorder)

26. Was repeatedly denied for several years until my local hospitals attorneys filed on my behalf they too were denied on my behalf and then filed for appeal went before a judge and was immediately approved the judge was enraged with how the people from the disability office handled my case and told them so he was practically yelling at them. I received retroactive payment going back 6 years and didn’t have to pay the attorney as the hospital that was originally treating me paid the lawyer’s fees for me.

27. I think I am one of the lucky ones.I applied for Long Term Disability June 28,2012 (I’m Canadian). I received notice on July 6,2012 that I was approved.I was 49 years old. I was on sick benefits from my work until Aug.3,2012 and received my first disability cheque Aug.28,2012.  I was assigned a case worker that walked me through the whole applying process.It was a lot of paper work,forms to fill out and gathering reports from different doctors but it was worth it.At that time,I was deemed disabled for my ‘own’ occupation and would be re-assessed at a later date.In the fall of 2013 I received notice that I was deemed disabled for ‘any’ occupation. I will receive LTD benefits until age 65, at which time my regular pension will kick in.My employer (which is the Nova Scotia government, I’m an X_Ray Technologist), will continue to pay my pension credits as long as I am receiving LTD benefits.Personally, I have no complaints with the system in Canada. I am sure there are horror stories out there but thankfully, I don’t have one. Good luck to you all and God bless!

28. called the SSA, set an appointment. The lady called, asked a bunch of questions…SHE filled out the forms, and requested all the necessary documents. I got a call a few months later, saying that my son was both medically and financially approved. Got a backpay deposit that day, and his first regular payment the first of the following month. It was the easiest thing I have ever filed for.

29. Make a few phone calls to various lawyers first.  There are some that specialize in this.  Be aware, you will receive a check (when you are approved) from Social Security for the weeks since you first applied.  A lawyer usually gets the case approved.  If you do the application alone you 98% of the time are denied.  However that first big check you get is sent to the lawyer and he takes the standard one third, and his office sends you a check for the remaining two thirds.

30. So I have a question.  I have thought about getting a lawyer BEFORE I file…to help file FOR me to begin with.  I’ve read that local attorneys can be really great because they KNOW the local judges & basically know what they want to hear/are looking for.  I wasn’t entirely sure that you CAN even get an attorney, if you haven’t filed yet.  Anybody have any insight/stories about this?

    • GraveyardWalker  
      A lawyer will only see a judge if you’ve been denied benefits and denied your appeal.  Hopefully you can avoid all that by getting approved for disability benefits!  I personally would not recommend a lawyer because in my experience they don’t do anything but fill out the paper work and then sit back and do nothing else.  They are the lowest of the low when it comes to lawyers.  I suggest finding a disability advocacy group that will work with you.  They know the laws and process as well as a lawyer but (again, this is just in my experience) do it with a lot more compassion and success.  They are much more involved  – a lawyer will file your case as is, where an advocacy group will tell/suggest what you may all do/get to help your case.  They cost the exact same as a lawyer, since the law determines how much can be charged for this type of service.  Of course, much depends on your personal case but they will meet with you and discuss all that with you.  I was approved on my first try with this type of help.  Best of luck to you!!

    • Sunny9552 GraveyardWalker  
      Thank you for the advice!!  May I ask what you received disability for specifically?  Who was the group you used (was it local or national)?  I WISH I had started all of this in July…. <groans>  I’m just completely sick about it.  I am so completely destitute & backed up on bills right NOW that I can’t manage to do anything else but try to get money.  Not very effectively either (major MS cognitive fog + medication side effects making me so distractable that I don’t know what I’m doing!!).  <pulls hair out>

    • GraveyardWalker Sunny9552I went with a company call Quality Disability Services – http://www.qualitydisabilityservices.com – My rep, Christina, used to work for the SS office so she had a ton of experience in knowing what kind of info they needed to approve a claim.  They’re located in Minnesota but if you’re somewhere else, maybe they can refer you to some one in your state.  I’ve been diagnosed with RRMS, depression, PTSS and back problems.  We focused on MS symptoms like vision loss and cognitive dysfunction.  She sent me to a neuropsychologist to actually measure/quantify to cognitive loss.  Going to a psychologist regularly may help to demonstrate depression, plus they can send reports/letters to SS office too.  In the meantime get some financial assistance from your county or state. THAT’S WHAT IT’S THERE FOR!!!  To help get through tough times until you get things worked out.  I was on food stamps (now called SNAP) for 6 months until I got my disability.  It’s not much to live off of, but it helps.  Also, tell your creditors that you’re waiting for your disability and some times they’ll work with you.

31. Four years ago I had a surgery that left me paralyzed on the left side of my body I applied for disability and was denied.  I then lawyer-up and was able to start receiving payments almost two years after the surgery and another one that ruined my vision.  Someone commented earlier about how it is not enough money to live on and I have to agree.  I feel like I am being punished for having had the surgery that without it I would have died.

32. My gp refered me to a pain management doctor to help get the disability, but I was also 60 sp my age helped. and Denise is right…have all your dates and meds and hospitalizations documented

33. Yes, I do get benefits from the U.S. Gov.
    My first (1st ) tip is to have all the documentation about every major and some minor illness you have… All the doctors name. Phone numbers and address……;
    2nd tip: keep these organized in a file with many multiple tabs that are in current year going back to went you first got sick;
    3rd tip: make sure you bring a strong friend meaning, someone with a good spence of self-worth with you who hopefully has seen you during your times of pain or surgeries or knows your life history – I forgot to say that
    This can also apply to parents getting it disability for their child or children which I have had to do for both of my daughters , my husband and myself – all at different times in my life….
    Or bring an Advocate from a state funded advocate group or hire a professional if you have the money
    4th tip; if you are going to be at
    this meeting for a while, set it up with refreshments and healthy snacks… this helps to put everyone at ease;

34. I recently left my job and have ever intention of returning to the workforce but I am absolutely terrified that I will get a job and I won’t be able to keep up due to fatigue or cognitive issues. I just hope and pray that I find a job that is low stress and that I can manage even if my symptoms get worse because I hear it is next to impossible to get approved for SSDI.

    • Ojibajo  Your right it is hard to get benefits.  I got turned down the first time and I was paralyzed on my left side and couldn’t take care of myself or walk without assistance.  Approved upon appeal after I lawyer-ed up.

35. This is so frustrating to hear!  :-/  I’ve got secondary-progressive
    MS, and was dx’d almost 13 years ago.  I’ve sweated it out in my most
    recent job for 11 years….the last few under just tortured pain &
    fatigue…& I was working from HOME!!  Eventually I just knew that
    if a job from home wasn’t working…then NOTHING was going to work (good
    luck telling me I can be a waitress, huh?).  So anyway.  I filed for
    short term disability with my employer…with the idea, after conversing
    over a couple years with HR people, that I would transition to long
    term disability through them, & THAT way I could keep my excellent
    health insurance.  Sometime during all of this, I would also apply for
    SSDI, and the greatest thing would be if I got them both!  😀  (ha…) 
    Yes, well…I was approved for benefits for TWO MONTHS only.  This after
    them seeing a very recent MRI with my usual brain lesions plus a brand
    new one in my cervical spinal canal!  I asked for reconsideration.  I
    presented 118 pages of medical records, on top of all the previous
    records & forms filled out by TWO of my specialist dox.  They still
    denied me.  😐  so now I am appealing…but scared to death!  FMLA is
    LONG gone….and if this appeal fails, then they will HAVE to terminate
    me (job long gone too)…and there goes my insurance which has basically
    kept me ALIVE all these years.  But the thing that makes me crazy, is
    how EVERYBODY….I mean EVERY-BODY (even MSers!)…says to me, “what? 
    they denied you?  that’s crazy!  YOU HAVE MS.” <smh>  yes, i do. 
    is a shame someone won’t tell the insurance company for me!!  Yeesh!  So
    I’ve been too terrified to even try to apply for SSDI yet….I know
    it’s ridiculous & I NEED to get the process started.  But I can’t
    stand being put on a pedestal and being expected to PROVE that I am sick
    (“but you don’t look sick!”…something like that….).  Why is it that
    with these damn invisible diseases, that, even with conclusive,
    objective medical PROOF that you have at least something not RIGHT with
    you….that people/companies refuse to accept it??  I dream of the day
    when people with these chronic illnesses will no longer feel the need to
    justify or prove their illness or degree of it to anyone BUT their
    doctor.  If my neurologist and pain management doctors, who have a
    combined total of 8 years of medical school and 8 years residency…and
    BOTH have been in practice for years and years…., if THEY believe me,
    then THAT should be enough.  THEY are the medical professionals.  NOT
    the insurance company (or even their dox who are probably just general
    physicians and not specialized….) or the government.

36. I have Disability Benefits. I have severe drop foot, cannot use my right hand very well and have bladder and bowel issues due to the MS. I was denied twice with SS telling me that I could be a waitress, ok I’ll just spill hot coffee in peoples lap. The 3rd time I had gotten a lawyer and it took 2 years before I was approved. The reason it takes longer for people with MS is that no 2 people have the same symptoms therefore making it harder to for SS to make a decision.

    • im1namlyn How can one be a waitress with only one working hand and foot on top of bladder and bowel issues? That’s maddening. It’s stories like this that make me afraid for the future!

37. I receive disability , and i had no problem to get it.  The only thing i hate about my p p is that you need to fill out papers every 3 years , i guess they think M.S. goes away.(makes me upset)  And you don’t get much to live on, it’s like you get punished for getting sick some thing you have no control over.  I had a good job 16 years ago and cause of the union and the fact that i was not well enough to go to work  with in 2 years , i lost my job.  Now i struggle .  Not fear- i didn’t get M.S. on purpose.  I wear rags while others where nice clothes- I have no car and can’t walk very far- not fear.  People do look down on you and think you are taking advantage well i wish i could trade places with them cause they are welcome to my life.  I could not live in a nice place cause i have M.S.  I hate the fact that i lost the life that had where i worked non stop and had goals and dreams.  Now the only goals and dreams i have are dreaming one day that i will win the loto cause the goverment does not give a darn.  They have nice cars -nice homes-nice clothes -and they don’t care that we are sick and it’s not our fault.  Thank you for letting me get this of my chest

38. both myself and my daughter get dla,
     i applied was turned down asked for reconsideration was tyurned down appealed and got low care … when due to reapply things had changed for the worst wasnt put up so asked for reconsideration was turned down so appealed and was then increased to middle care and low mobility 
    daughter is on dla high rate care and high rate mobility-when time to reapply mobility lowered to low rate no changes to her needs so donty  understand why  , asked for reconsideration no change to decision and am in process of appealing about hers …