Share Your Story & Advice...Social Security Disability!

Hello fellow fibro fighters! The time has come upon me to apply for Social Security Disability. It's been 2 days into the process. I haven't even finished my online application & they've sent me 2 letters-cannot submit my application online & my application has been submitted, please schedule appointment. This whole fiasco is already on my nerves! I won't even get into the paperwork & medical records aspect. I've contacted Binder & Binder for my legal consultation. Now it looks like I collect medical records & wait.

I've been told not to go into this without legal representation, so I do not intend to. Share your stories here, your experiences, I would love to hear them & I sure could use knowing others out there can relate to my living nightmare, lol. Thanks all, gentle hugs!

I, too, found the online forms overwhelming. I found an attorney here in my town to take care of this nightmare for me. Fortunately, she has a lady on staff, who actually has fibro, that took the time to ask me the questions on the phone while she filled out the online forms. I received my award letter three months (almost to the day) after initial submission.

I did have to go talk to a psychologist. Partly because my attorney included depression in the reasons for disability. (Although she kept telling me she wasn't the psychologist, she was just getting the answers to questions FOR the psychologist--yeah, sure, right, uh uh, I believed THAT one--NOT). Some of the questions get very personal. For instance, how many times a week do you engage in sexual relations. Um.... none. Fortunately, my very wonderful husband was there with me to confirm everything I told her.

I think I gave my attorney's assistant tooooo much medical history. I had, after all, complained about the beginning symptoms of this to a doctor in 1981. I was told anything past 5 years was not relevant. That bothered me, because my initial diagnosis of this, and the only one on record, was waaaaaaaaaaay past that date.

My attorney charged a $1,000 fee if I was approved within the first 6 months after filing. (And she let me pay it in a 2 month installment, since I'd had no income for the previous 6 months.) If it took longer than that, she took a percentage of my "back-pay" award. I have heard not so good things about some other firms (like Binder & Binder) stretching the time out (not having all the documentation needed the first time they filed, filing extensions to allow time for more medical testing, etc.) so that they can get a bigger payout. I'm so glad my attorney's office doesn't work that way. Although getting a huge chunk of money once payment started would have been nice ;)

Check out the paperwork on how your attorney will be paid. When I made the arrangements with mine, she had to file paperwork with the court letting them know I would be making payments, when they were due, how much, etc. Should I have defaulted on paying her, Social Security would have taken it out of my next check. Just make sure you're covered on this. You may want to google "complaints Binder and Binder" and review that information.

Good luck with your journey, may it be a short one with a happy outcome!


P. S. I use to live in the town next to where Binder and Binder's headquarters is located. I knew people who had worked in that firm. Please read EVERYTHING they have you sign.

I used to work for Legal Aid. Social Security regularly turns people down on their first application. (While I was there, all cases had to go to at least one appeal.) Do not give up. If you keep plugging away at it, it will eventually work out. Get a lawyer. One who specializes in Social Security will not be terribly expensive, generally they get paid from the back benefits owed to you. If you cannot afford one, find Legal Aid or Legal Services, they are overworked, but really good folks. If anyone is from Southern Ohio, Karen Justice is an attorney in Portsmouth who rocks.

My disability was through Illinois State University Retirement Systems. It was a six-month process where the main headache was incompetence at the HR office at work. Still, when I finally got on, they did back pay to when I should have been getting payments. Now, I am trying to learn to live on disability, which is a challenge itself.

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It looks now like I will not be retaining Binder & Binder. Thank you so much, Shatosa, for saving me from another headache! Our neice referred me to a different firm based in Ohio (we're in Michigan) but they work out of Michigan also & they have a 97% success rate. All of the stories so far are just blowing my mind, who knew?! Thank you all for sharing!

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I can sympathize with you all and how much time it takes to do this on your own. I did not plan in applying for SSD, but the long term disability insurance company made me within 30 days of granting me benefits from my employer or I could lose LTD benefits. Just filling out applications and getting medical records together was so overwhelming - felt like I was still working! I started the online application for SS and after about 10 questions I had to quit. I then placed a call to Hoglund Law Offices (have offices in Minnesota and Wisconsin - maybe other states) and they came to me after I gave them my history online.

I last worked the end of May, 2013 and they told me that the earliest I could get benefits would be 5 months later, November, 2013. The law firm got all my medical records together within one month and they submitted the claim on Oct. 1, 2013. I was surprised to get a call from my local SS office the next day! I was asked many of the same questions on the application as well as ?? About health insurance and household income. This was to see if I qualified for SSI, which I didn’t. Within about 3 weeks I had to fill out a 14 page form about daily living.

In December I got a letter to see a SS doctor for an evaluation. I was surprised to see that it was a psychologist, but found out it was due to the additional diagnosis of depression, anxiety and severe sleep problems which are common to fibro. I had my appt. Jan. 16, 2014 and it was over an hour long. He was a chronic pain psychologist and seemed pretty thorough.

I just so happened to check my bank statement online on Wednesday, Feb. 5 the and there was a large payment that said it was from SSA. I then went online and created an account (can only create one if your status is active) and there was a verification letter I could see. It did state that benefits started for November and the payment was for November and December and what I would get each month. Still haven’t got an official letter from them, but my lawyer stated I would get one that says exactly what I will owe to the law firm. My contract with them says I am to pay them 25% of the back payment - which isn’t much considering I was only able to get it starting from November. In cases where the back pay is huge, SS will only allow law firms to receive 6% of back benefits.

I am 57 years old and am sure this played a huge part in getting benefits the first time. I’ve worked full time since 1993 so I’m pretty close to retirement age. I had medical records from as far back as 1990 when first diagnosed. Make sure that you do include all diagnoses when applying. Especially important for those of you that are younger.

I wish all of you the best when going through this process. It doesn’t hurt to talk to a few law firms or lawyers before you decide on one. I was so mentally drained and confused this summer that I was happy to have someone else do it for me. And they would have stuck with me if I were denied and had to appeal. It’s good that you asked others before you made the decision about the one firm. Word of mouth is very helpful!

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I applied for social security disability in June of 2017. I called and they gave me a phone appointment. I gave them all of my information. I have fibromyalgia, arthritis, depression and anxiety. They sent me forms so they could get my medical paperwork from my doctors. They also sent a form to me and someone that is familiar with my condition. We had to answer all the questions about my condition and how my illnesses has affected me. They called me in November and asked me, when was the last time I saw a doctor. It was in February, because I no longer have insurance. One week later they sent me to one of their doctors. I was approved for SSD December 8, 2017. Oh at the time I was working. I never consulted a lawyer. I was 56 at the time. I am waiting on approval for SSI. I get my first SSD check January 24. They said I became disabled in January 2017. They will send me my SSD back pay after my SSI approval. I hope this helps someone. I never contacted a lawyer. Oh, I got a letter January 20 from the Department of Education. It said the Social Security Administration had contacted them about my disability and they are going to write off my student loans.


what part of the US are you?
I applied and by May have my court day… I am going to school also part-time, can they still write off my past students loans?
I also have besides Fibro, clinical depression, anxiety disorder, Lupus, fatigue, and some mental…
I hired a lawyer.

I’m located in PA…also I’am 31 yrs old

I’m in NW Indiana. I never had a court day. After going to their disability doctor, I was approved 3 weeks later.
I don’t know about the student loans. The Social Security Administration started the process for me.

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Oh wow! Thats good… I have court soon. But I am trusting God. He will di His will.

Hi, first I want to say that I am new to this site and it has been a Godsend!! It’s so nice to know people are going thru the same exact thing AND you finally don’t feel so CRAZY OR ALONE!! I have had Fibro since 2014 and it has turned my life upside down. I have a very understanding husband :raised_hands: I am thinking about filing for disability. My ? Is how do you answer the " can you shower on your own" question, I mean I can but it takes everything out of me. The water sometimes hurts my skin. I can get dressed by myself although sometimes I would rather just not! Lol I am just curious. Thank you all for sharing your stories​:heartpulse: butterfly kisses and gentle hugs.

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Hi, my name is Wanda. I’ve been on disability since December of 2017. When filling out the forms, just be honest and explain exactly what you do, and how it makes you feel. Tell them how it takes everything out of you. How the water hurts your skin. The feeling you have after getting out of the shower, exhausted (if that’s how you feel), and the feeling of not wanting to get dressed. Even before you attempt a shower, it appears you have to convince yourself, because you know what it will lead to. I’m usually fatigued before and after taking a shower. Just be honest and explain how your disease affects your physical AND mental state. Good luck😊

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I live in Indiana. I’ve found out after they write off your student loans, the only way you can get another one is to say your are no longer disabled. The Social Security Administration has a program called, Ticket To Work. If you are able they provide free training for jobs. They will help you with your resume and help you find a job. You can only work a certain amount of hours. They also will help you with counseling concerning your benefits. They contacted me 5 days ago. I’m trying to get myself together. Hopefully I can work 20 hours a week, hopefully by the end of June. I’m trying to take a break from working right now.


Hi Wanda, I had a hearing last week, I got so nervous that my mind went blank, like a fog and forgot to say so many things, I was so anxious that my hands was shaking like crazy! With the Fibro, Lupus, depression, migraine,insomnia, IBS, Raynouds, Chronic pain, mental impairment and anxiety… I pray that will be enough since my testimony wasnt so great. I had so much to explained, I had the chance but my words did not came out. But Jesus is my Judge and he knows what I go through everyday, I did not have to go to their doctors, also, none of my doctors helped me, they did not wanted to get involved.

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Hi Wilka. I have heard people say they wrote a letter to the judge, explaining their situation. I did not go through my doctors either. I never mentioned anything to them. I applied for disability over the phone. Goo luck!:blush:

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Thank you so much. I appreciate any and all advice. Did any of you use a lawyer? I hope you all are having a great weekend☺

Hi Amanda, You will need legal help which is garbage because it is nothing but a money scam BUT, you can’t succeed by yourself!
You will be denied 2-3 times! The way I think about it…it is say, 100 people apply…They Deny ALL 100. Now, how many out of 100 will go again to fill out and do all the work to re-apply, maybe 50? Then, the 50 get denied AGAIN. Now maybe 20 go the whole gamut to get a lawyer ~ who now gets 30% of what ever you get from “back pay” from the day you FIRST applied (IF you NOW get APPROVED). But, usually by the 3d try, especially with legal help, you will get approved. So, the bottom line is, out of 100 people who originally applied, Social Security is paying for 15-20 people instead of the original 100! I hope this helps…GOOD LUCK and also try to live on what you receive each month!

I applied over the phone 10 years ago. Soc.Sec. sent me a form and I attached a SHORT note from my GP saying I had fibro. I was approved 3 weeks later, and got my first disability check in 4 months. I live in NEbraska. My husband was a different story, he went the same route, got the run-around, had to hire a lawyer and things dragged on for over a year. At the final hearing with questions, after he answered the ? he went to the car. Lawyer sent me to bring him back, and Judge approved him. What a difference in appeals.

I’m so pleased to hear that many of you had little trouble getting approved in a short period of time. My federal disability case dragged on for FOUR YEARS before I finally won. It would have been longer but my lawyer got my last court denial kicked back into the system at the same “level” (which I don’t fully understand, and that’s part of why you need a lawyer) but he said that saved us at least another year.
I had a separate case to fight with my employer, as I was eligible for disability benefits through their retirement system…that fight dragged on for 13 months before I won. They sent me to a doctor of their choosing…when he said “She has fibromyalgia, she can’t work, there’s no cure” they sent me to another doctor who would say what THEY wanted to hear! But I eventually won. Their aim was to get me to give up and just take the cash value of my retirement…if you are in this type of situation with an employer, DO NOT give up. Now, 8 years later, I’ve already collected WAY more than if I’d given up and taken the cash value, and they have to keep on paying me. They’ll do almost any underhanded thing to avoid this. I was a gov’t employee and they know every trick to make you give up and not approve you for permanent disability, because they know darn well this is incurable and they’ll have to pay me every month until I croak. I was fairly young at the time (37) and they desperately wanted to avoid paying someone every month who would probably live a long time. You are not a person to them, you are just a liability, and they will pull any dirty trick they can, but you WILL succeed if you keep up the fight.
Sadly this is not possible for a lot of people who need money to live on. I would not have survived the 13 month employer battle or the 4 year federal disability battle without my parents who helped me keep my house and gave me money so I’d have basic utilities and food to eat. Without them I’d probably be living in a cardboard box somewhere.
Even people who don’t fully understand Fibromyalgia or the horrors of the process for applying for benefits are a bit surprised to hear that I was never living with my parents…they assume I was totally dependent after I became ill. The truth is, I wouldn’t have my own home and probably would have been totally dependent on them, if they hadn’t been able to afford to help me.
I had to make some concessions, too…when I quit my job I moved back to my home town and I bought a house with the proceeds of the big beautiful house I sold. I had to move into a tiny house half the size of what I was used to. But it was totally worth it to keep my independence. I had a fantastic relationship with my parents, but I doubt any 37 yr old independent woman wants to live with her parents if it can be avoided. We need our independence and autonomy.
I agree with the advice above, almost no one wins a disability case without a lawyer. Yes the lawyer will take a percentage of your back pay when you win, but you pay nothing up front (and I certainly didn’t have any money to pay a lawyer, I was struggling just to survive).
Four years is a long time to have people calling you a liar and telling you you’re just lazy and there’s nothing wrong with you. But you must persist. YOU know you’re not crazy or a liar. YOU know you can’t continue working, even though you want to. It’s a hard fight, and it gets nasty, but someday you will succeed and that stress and nastiness will be over. Keep at it and do NOT give up.

I hired an attorney that specializes in disability. Was turned down on paper and just said the hell with it. 2 years later I called the attorney. They said I had a hearing in 2 weeks. They kept working on it even though I hadn’t asked them to! They told me judge would give me disability without a hearing if a changed my onset date by 2 years. So I did. I’ve been on disability for 2 years now and am now on Medicare. You qualify after 2 years on disability. Just in time my husband of 35 years had divorced me in July. I started Medicare on January 1st. I’m getting worse. Every year less activity. More pain. Recently my blood pressure tanked. 84/42. Saw doctor and cardiologist. They can only give me meds. But on my meds I just had a relapse. Unable to work at all now. No going out. No one to take care of me. I stay as active as possible. Crazy thing though. I looked up fibromya and low blood pressure on the internet. It’s a rare symptom. Sick of finding out information for my DOCTORS when they claim to “specialize” in fibromya. I’m giving each of my doctors a copy of the article. It says this is a neurological DISEASE. There is no cure. Some get better. Some stay stable. I’ve only gotten worse which accounts for about 30% of us. I can’t fly. Should not drive. Missed my granddaughters birthday party. This sucks. I also have suicide in the back of my mind. The depression is horrific during a flare. Keep pulling myself up. Others need me. My son and granddaughter. I also take care of my elderly father. I shouldn’t drive ? Who would get him to his doctors? This is horrible. It’s debilitating. But I push and I push. I will continue to do wha refer I can to have a good life. Maybe they’ll find something to help us. We have to have hope and faith. Faith is the thing that drives me. But a night out dancing? Not gonna happen. But working in my garden? That will happen until I’m on deaths door. You have to find joy in what you can do. Try. See those through this life that mean the world to you. And then it’s up to us what we do.