The Sleepy Girl Guide to Social Security Disability

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Art: Olivia Colleen Smith

Welcome

Welcome to the Sleepy Girl Guide, a self-advocacy guide to Social Security Disability. This guide is designed for anyone who is homebound and for people with invisible illnesses, such as ME, CFS, MCS, MCAS, POTS, EDS, Mold and Neurotoxic Injuries, Lyme, Fibromyalgia, Long COVID, and Mental Health.

If you are too sick to continue working (or can only work a small amount) applying for disability can help you gain stability, medical care, and the ability to take care of yourself.

Many of our readers have taken smart steps to help themselves get approved more quickly or more easily. These brilliant and kind-hearted people have shared all their great stories and ideas below.

What’s In This Guide? 

I
The Basics
Basic stuff everyone has to do

II
Improve Your Chances
Extra stuff you don’t have to do. (But maybe want to).

III
What in The World is Going On?
Navigating the Social Security maze

IV
What Else Can I Apply For?
Other forms of disability. Other kinds of help.

I

The Basics

Basic stuff everyone has to do

Not Ready Yet?

💮 If You Plan to Apply Someday
💮 If Your Employer Offers Disability Insurance
💮 Am I Eligible to Apply?
💮 “Someone Said I’m Not Eligible”

Ready!

💮 Submit a New Application
💮 What Happens After Applying

Social Security May Ask You To:

💮 Fill Out an Adult Function Report
💮 Visit The Social Security Doctor

How to Appeal (if needed)

💮 Request Reconsideration
💮 Request a Hearing Appeal
💮 Options After Hearings

II

Improve Your Chances

Extra stuff you don’t have to do. (But maybe want to)

It’s Possible!

Please don’t be discouraged if you have heard stories about people who were very ill and got denied. Here’s the most important thing we can tell you: Most people do not get approved for disability based on how sick they are. They get approved based on how well their illness and limitations are documented, and how complete their Social Security file is. That is really unfair, but it is also really true.

Luckily, you can make your Social Security file really great and give them everything they need to make a fair decision. Reading more and learning more and taking more steps is the best possible thing you could be doing right now.

Improve Your Chances

💮 New Application
💮 Reconsideration
💮 Hearing Appeal

Work With Your Doc

💮 Tips for Visits
💮 Medical Tests

Doctor Paperwork

💮 Get a Function Form
💮 Sample Forms
💮 Or Get a Doctor’s Letter
💮 Sample Letters

Doctor Conundrums

💮 How Can I Get My Doc To Fill Out Paperwork?
💮 How Can I Find a Doc to Help with Disability?
💮 How Can I Tell What My Doctor REALLY Thinks?
💮 “I Cannot Get to the Doctor”

Medical Records

💮 Best Way to Collect
💮 Best Way to Submit
💮 Best Way to Check Your File 

Get Help!

💮 Find a Good Lawyer
💮 Apply Without a Lawyer
💮 Who Else Can Help?

Special Conditions

💮 “Chronic Fatigue Syndrome”
💮 Mental Health
💮 Fibromyalgia
💮 Toxic Mold
💮 POTS
💮 Lyme Disease
💮 Ehlers Danlos Syndrome

More Ways to Improve Your Chances

💮 Listings and Rulings
💮 Medical Summaries
💮 Acceptable Doctors
💮 32 Support Documents
💮 Complete List Including Everything! 

Learn from The Pros (Our Readers)

💮 Success Stories
💮 Survey Results
💮 Quick Approvals  

III

What In the World Is Going On? 

Navigating The Social Security Maze

Confused about how Social Security works? Where your application is? What happens next and what in the #($*& is happening right now? Here’s where you can learn things to help you feel smarter, and more informed, and give you new and interesting things to feel confused about.

What Now? What Next?

💮 Complete Disability Timeline

Waiting For a Decision?

💮 18 Things to Do While Waiting
💮 Life Events that Can Mess Up Your Disability Case

Am I Eligible?

💮 Am I Eligible for Social Security?
💮 “Someone Said I’m Not Eligible”
💮 “I Don’t Have Enough Work Credits”
💮 SSI? SSDI? Both? Neither?

Special Circumstances

💮 You are Young
💮 You are Working 

Get Smart

💮 Sleepy Girl Policy Library
💮 What’s SSI? What’s SSDI?

Forms & Phone Calls

💮 Social Security Forms and Questions

SSI Financial Regs

💮 SSI Financial Interview
💮 Rules to Watch Out For

Frequently Asked Questions

💠 How High Will My Check Be?
💠 I Have a Question or Problem?

IV

What Else Can I Apply For?

Let’s find out!

Long Term Disability (Through Your Employer)

💮 Applying for LTD
💮 LTD for Chronic Fatigue Syndrome

Other Things to Apply For

💮 Other Forms of Disability
💮 How Can I Survive Financially While Applying?
💠 What If I Can’t Afford the Doctor?

You Did It!

💮 Everything No One Ever Tells You After You Get Approved

64 thoughts on “The Sleepy Girl Guide to Social Security Disability”

  1. This website was really helpful for me in navigating my disability claims. Thank you so much for putting together all the information and organizing it so well.

    I was successful in my Social Security disability claim, and am lucky enough to also have private Long-Term Disability insurance. The interplay between these two insurance systems is complex, and I didn’t fully understand the interplay or the implications of my decisions until going through the full process. In the hopes of helping someone else, I wrote up what I learned. It’s available in an open Google Doc here: https://docs.google.com/document/d/1m6IJwgtXJRsSDvI5MZ_HM5UJqDGWj6yfMIL0v2KBLPQ/edit?usp=sharing

    I hope someone finds it helpful.

    Like

    1. Hi Laura

      I apologize that your message got overlooked and a very slow response. I am incredibly impressed with the thoroughness and details of this document you created. Congratulations and great work. I will put a link to it in a few places and leave it here so more people will be able to find it and benefit from it. Thank you again for using your knowledge to help others. 💖

      Like

  2. Hello, I just want to tell you you’re fantastic & this website is the best thing on the entire internet for ppl applying for disability. For real! It’s so nice to read info by an actual person who gives a shit.

    I just found out today I got approved for SSDI after just 2 months after applying. (Yay cancer.) Thank you so much for all your hard work!! It means a lot. And I hope *you’re* doing well & have a nice day. ❤

    Liked by 1 person

  3. I have so much to share about what I went through and learned to get approved for SSI this past November, 8 months from initial file date March 2020!!! From a shady disability lawyer to all the hoops, politics and most importantly the prep before applying, one of COUNTLESS GEMS from wonderful you and all your wonderful contributors HERE!!!!! Seriously, don’t apply until you have collected all your records, I was shocked to see my charts and spent months getting corrections made and ~~accurate supportive documentation in charts regarding what diagnoses and symptoms I was “claiming” from my ongoing-established Drs,**that reflected SSA criteria**~~ = that is your case right there. And YES get your Social Security statement online, mine was incorrect, too, ugh, ALL before even applying, phew!!! so much work and learning and never- ending drama! I will have to find you on FB to share some tricks, dealing with analysts, levels, and organizing the nonstop paperwork…I hadn’t worked that hard in years lol but paid off, enough for right now anyway. I waited until I felt confident I had enough ammo for the process including minimum requirements to get past first step of financial qualifications. I have medi-cal (Medicaid) so the Dr office dealings along with their individual personalities took patience, persistence, some car-crying and yes guts! Be your own advocate, get educated and get a trusted someone to help if possible. Sorry not sharing sooner, truly am so appreciative I cannot express my gratitude!!! Unfortunately, as you all can relate, always behind in to-do’s when get a couple decent hours in a week, playing catch-up has been holding me back from connecting here. Trying to use devices with fingers sore from the most recent Lupus arthritis and have been a Fibro, CFS, chronic migraine etc. warrior for 15 years. At least now so much less stress I can focus on improving my quality of life! Oh, gotta run, online psych appt…get one of those, too! 😉🙃🤪😊🥰🥳

    Like

  5. Your guide really helped me. I’m an EDSer and was RRB not SSA disability. And the RRB has NO handy links or websites to refer to (tho they use the same rules). I followed this guide and was approved first round without an attorney. I can’t thank you enough. I’m sure this has helped more people than you can imagine. I hope you are doing as well as you can today 💕

    Like

  6. Thank you so much for this website. I helped my husband file for disability in September and he was approved in November. We read everything here and followed the advice. I sent in a big binder with all of his medical records, printed off one of your doctor forms and his doctor filled it out. We read here where someone sent in a copy of the part of the social security medical listings that they qualified for along with the proof, so we did that. We also read here how to compose a short but detailed personal letter and included that also.

    I am certain that the advice here is what got us approved. Thank you all so much!

    Liked by 1 person

  8. Hello sleepy girl.I had the pleasure of reading some of ur site on how to live on SSI.My problem is that they originally awarded me SSDI.The SSA then sent me a letter that I was 2-pts. shy.This is a 100percent lie, I had $$ from a lawsuit while on SSI & they then said I owed them a substantial amount of $$.My attorney at the time told me I can put it in a medical account & nothing would be done to my SSI.He lied & just put it in his medical account.Now I know I only owe them $6411 from collecting while I had the $$ & stuff I wanted to sell.I’m almost paid up on the truth of the $$ I owed them & all the stuff I wanted to sell is long gone within the 13,14 months I had the money.I had 3,4 nervous breakdowns dealing with the SSA/GOV(SSI is a GOV. Program and they don’t care like so many other’s).I can’t find any attorneys to help me yet,so I’ve been dealing with them on my own. The last request for help (I think),is I would like to try & go back to work so they can see I can’t work where they want me(they actually want me dead).I am stuck between a rock and a hard place w/these individuals & other’s.I have no family, friends,or even hope leaves me sometimes.I have a failed lumbar back surgery,the 3rd disc already broke.I have 2 in my thoracic & 1 in my cervical.Besides all the nerve & muscle damage, including hips.Now I wasn’t put here to be perpetually made to get into a fight.I definitely wasn’t put here to be uneducated or poor, with out a woman & children. There’s no way I’m giving up on what is all rightfully mine.Also medicaid & the medical industry treats & thinks I am an asshole.They all need to look at themselves then go FOAD. Is there anything you maybe able to help me with,or communicate with me about. I won’t stop reading ur site & definitely am not giving up.I’ll be leaving this life on my terms, not anyone else’s. Thank You.Joe M.

    Like

  9. I am currently rated 60% disabled through the VA veteran system even though I am 100% disabled and no longer can work. I have applied for Social Security disability and got denied. Big surprise. My health issues tossed the letter aside. I knew I was going to be denied with how the lady was working with me. I reached out and even contacted people on how to report her because I wanted to actually file a formal complaint and of today I still don’t know how to do that. I feel overwhelmed already with life, becoming disabled and not being able to work full-time anymore or to pay all my bills which keep coming in and I’m living under my means…. that doesn’t stop the ridiculous high-rent costs or yearly rent raises….

    Liked by 1 person

      1. No the state said I wasn’t disabled based on the crappy service I had and bullshit first visit from some doctor who asked me a couple questions and had me bend over and spread my arms. Meanwhile I’m starving, sick, and dying. The care through the VA is horrid.

        Like

  10. Your blog is so comprehensive. I wish assisted care facilities (or elder care services) were as informative as your site! My father is still living independently (and using PERS), but when the time comes, I will deploy all of your strategies listed here.

    Liked by 1 person

  13. I just want to say thank you. I got my reasonable accommodation approved because of this site. It helped me a lot, people in my family wouldn’t help me. I did exactly what was told on the website that was include for reasonable accommodation for kids with disabilities. thanks for creating this. it’s a blessing.

    Liked by 1 person

  14. My partner is applying for SSDI based on fibromyalgia along with anxiety and PTSD. He had to submit a functional assessment form and go to a consultative exam with a MD in the initial application. He was denied though the decision acknowledged he does have fibromyalgia. I’ve been helping him complete everything. I’m a lawyer but this isn’t my area so I’ve been doing a lot of research on my own and found your website very helpful. We applied for Reconsideration. We both were asked to complete functional assessments – which we did. Now he is being scheduled for additional consultative exams for both physical and mental assessment. From what I’ve read, this seems a little unusual at this stage. Does this happen often?

    Like

  15. Hi, How do televisit appointments (due to Covid) qualify as current medical records by the Social Security Administration?

    I saw my doctor 8 years ago and have a lot of notes and medical records and his charts talking about my condition. But I haven’t seen him in a while. I’d like to start again so I can get current records again but the office is only doing televisits (as are a lot of other doctor offices that aren’t emergencies) due to covid restrictions.

    Is it even worth it or should I wait? It’s fairly pricey at over $200 for 1/2 hour televisit.

    Like

  16. Thank you for your excellent site. It is full of information that people need to know, but is hard to find, hard to understand, or hard to put together. You do this all beautifully. One thing I would request, if available, is there a way to get all the linked information on one page, or be downloaded into a PDF or other format? My CFS/ME makes following all the links hard, and I get lost trying to follow each link after link. So, for example, the housing links start small, and as I get more into questions, more information gets added on each link. This is great at page one, with a few links, but as each page opens, then there are more links, and then that page leads to more links, and pretty soon, I am trying to open tons of tabs so I do not get lost and lose my place or miss something. Maybe use the links as an index, like you already seem to be doing, but put all the info as a downloadable document, maybe even sell that as a book? There might be a technological way to already do that, so you don’t spend your time trying to organize it or retype it. Your work is so needed and so helpful, and I appreciate any consideration you give my request. Thank you.

    Liked by 2 people

  17. I’m curious, how do you have energy to do everything??? How do you have energy to do all the follow-through stuff, go to all the doctors, appointments, fill out all the forms, do all the research, etc.. ????

    I feel so depleted, I barely had energy to write this comment. Ans just looking at all the options of how to help myself has made me feel overwhelmed.

    I feel so defeated 💔.

    Like

    1. Mandy,

      You are not alone in this. Many of us face this same problem.

      Some of our readers say they work at it 5 minutes a day. Any little amount can help.

      If you have any friends or family willing to help, some people reach out and ask.

      It can take time. Please don’t give up hope. Many were in your position and got there eventually. 🌷🌺 💗

      Like

  18. Your guide is amazing and will help a lot of people, and is full of genuinely good information thank you for writing it and keeping up with it. You do a great service to society as a whole in america.

    Like

  20. Thank you so much for putting together such complete, specific information. I stumbled upon your Web site after pulling together SSI bits and pieces from governmental agencies, only to find that you have everything I need right here! Your information is accurate and up to date. It has helped us greatly in future planning for our disabled children.

    Liked by 1 person

  22. Hi Sleepy girl, I really hope this finds you well! I just wanted to first and foremost say not all heroes wear capes lol this is an awesome blog to have come across! I currently receive SSI (I’ve been wheelchair bound my whole life and have never worked). I’m 27 now and want to start working part time but I’m now just trying to learn how to go about it the right way without losing my benefits or insurance! I was just wondering if you have a Facebook I can message you on so I can get some advice if you don’t mind?? Thanks so much you don’t even know how much you’ve helped me already! ♥️

    Like

  23. I have Huntington’s disease. I had a blood test done in 2010 with a positive result. My grandmother and uncle passed away from it. My mom is completely disabled. I have it and so does my brother. I stopped working in 2012 to help with my mom. I became symptomatic around 2016. My Date last insured is 9/30/2017. I’m 39 years old. I have plenty of records to support my disability now. But the only thing I have before my date last insured is my positive blood test in 2010. I’m in reconsideration phase. Is my diagnosis enough from 2010?

    Like

      1. I worked from 1997 to 2012. Almost all of the years were full time. I was an Ultrasound Technologist. I don’t have actual records for 2016 and 2017 but I know my doctor would write a letter. Would that be enough. I’ve had MRIs and all the other neurological testing starting in 2018.

        Liked by 1 person

        1. I’m afraid this is a tough one. You’d need to show an onset date after you stopped working (or stopped working over SGA) and before your date last insured.

          A doctor who knew you before the 2017 date could write a letter about that time period….

          If doctor didn’t know you then I’m not sure how they would be able to verify that you were disabled at that time.

          I wish I had a great idea here, I think this might be a tough one.

          Do you know if you are eligible for SSI? (no work credits needed, just low income and assets)

          The difficulty is that even if you had a positive blood test in 2010, you weren’t disabled at that time…. so how to prove when it was you became disabled?

          do you have any kind of records that show any symptoms at all after you stopped working?

          Like

          1. I’m not eligible for SSI. Would a letter from my doctor saying symptoms began in 2016 and I was disabled then be enough?
            I also have a question about reopening my prior claim. I didn’t appeal it. I was a little overwhelmed. It was in May 2019?

            Like

            2. I wish I had a great answer here…

              I think a doctor’s letter will help if either of these things are true:

              1. this doctor was your doctor in 2016 (or around that time period) and writes that they saw you at that time or

              2. you have some kind of medical records from that time that note symptoms (even without a diagnosis) and doctor reviews those records and draws conclusion that those symptoms/condition is consistent with your current condition

              There is some more info on this topic here:
              https://howtogeton.wordpress.com/date-last-insured-expired-work-credits/

              Info on reopening. Hope this is helpful for you: https://howtogeton.wordpress.com/how-to-reopen-an-old-claim-social-security-disability/

              Like

  24. I have a question and I don’t know anyone who can answer it. I quit my job in June 2019 due to my conditions and have applied to ss for disability. I have Fibromyalgia, Sojourns syndrome, hypothyroid. I went to the doctor the best I could in the last 3 years but it was hard to pay them. Now that its just my husband working we can’t afford health insurance for me or barley live. I also have cataracts and glaucoma. Do you think I have a chance of being approved the first time? I applied June 2019 and they told me a decision would be made by Jan 2020

    Like

    2. I just saw this. If “Sojourns syndrome” is an autocorrect of Sjogren’s syndrome, it is now in the Blue Book. You could get disability by ‘meeting the listing’, which leaves less room for opinion (bias) from the SSA.

      Like

  25. Finally approved, took me three years and one denial so I’m very relieved and grateful.

    Thank you for this awesome site, sure gave me good info.

    Like

  26. “How to get on” is such an amazing resource. It makes me cry – knowing how sick the writers are and all the BS they have had to deal with. (My favorite absurd horror story – how one highly disabled woman applying for disability was denied benefits and told she could do a job as a fruit picker or postal employee!) Yet it also brings me joy that these individuals use some of their very precious energy to share their wealth of knowledge in the hopes that others can do better.

    One suggestion for a post is to have people share some photos of their homes. Mine used to be so clean and tidy. But after years being ill, with little if any help, it looks like a tornado passed through it. It is a real source of shame for me, even though I know it should not be – I’m doing the best I can right now. But it’s hard. Actually if you want a volunteer post, I’ll write it, or at least contribute photos. Though it will take time. lol 🙂 I think you have my email on my submission.

    Like

  27. Thank you so much for this extraordinarily helpful site! I feel so much more educated and empowered going ahead with my social security disability application.

    One suggestion – it would be very useful if there was one button or link I could use to download all the content (preferably as a PDF), at least the content directly related to social security disability.

    Thanks again for assembling such incredible resources.

    Like

  28. Hi there! I finally got SSDI for TBI and migraines in May 2019 with the help of a law firm. Meanwhile, my best friend’s husband has a squamous cell cancer that metastasized to his armpit lymph nodes and now his chest cavity. My friend was working numerous jobs, taking care of the farm and caring for her husband on a shoestring. So I convinced them to let me help them apply for SSDI for him. With help from your posts, I was able to walk into their Social Security office fully prepared with all records from his radiologist and oncologist and some other doctors, as well as two thorough residual functional capacity forms. That was on a Tuesday. He was approved on Friday of the same week! Just wow! This will more than double their income in addition to providing an emergency fund that had been drained to nothing, Thank you for all the great advice!
    PS – I normally go to a Social Security office in an urban area, My friend is assigned to a country SS office. The difference was amazing to me – a short wait, pleasant, helpful people who seemed to care versus being another number in the city.

    Liked by 1 person

    1. Thank you so much for sharing this amazing story! Congrats your friend was so fortunate to have your help.

      May I include this story on the page about compassionate allowance? Would you like me to include your name or anonymous?

      I am thinking this is a compassionate allowance approval? Do you know?

      It is the quickest approval I have ever heard of. Wonderful work. 🏵️ 🌼💛 

      Like

  30. Hi sleepy girl,

    I have been under full medical review (SSDI) since March 2019 I have an a evaluation with a therapist on Dec 10, 2019

    I am very nervous about this, because I met with this doctor 4 years ago when, I had my previous fill medical review, long story short, he hardly did anything resembling a evaluation, as a matter of fact, as soon as, I sat down, he made a off hand comment about how, id probably been on disability for years, so I must be better now.

    I was put off by his nasty unprofessional conduct, I no longer felt like this was a safe place for me to share. I think that was his goal to be honest, imo

    The rest of the time, I was there (less than 20 minutes) he talked about himself (his personal life)

    FYI I had to file an appeal, because of this imo

    My questions to you are:

    How do I handle this doctor, if does this again? (I know he most likely will)

    How do, I properly handle this evaluation?

    Can, I record my session with this doctor?

    Thank you

    Like

  31. I won my case last month! It’s been such a long, difficult road. I wanted to thank everyone who writes on this site SO MUCH for all the help and advice you’ve given me. It helped so much and I SO, SO appreciate it. You’ve been such a blessing. Thank you! 🙏

    Liked by 1 person

  34. I really appreciate your input on SS and SSDI! It is very confusing for me and other survivors, so thanks for throwing us a rope!😀

    Like

  36. Hi,
    Where can I find in your blog for more information on about my 18 year old daughter to get benefits while she just started her first year at a community college as a full time student? I am disabled and on SSDI benefits. Before she turned 18; I received child benefits. But when she turned 18, then the benefits stopped. But if she get benefits now because of while in college…will this benefit income affect her FAFSA and Pell grant and my low income housing (LIHCT/section 42)? And she also works at her part time job.
    Thank you, CS

    Like

  37. I just wanted to say thank you for this fabulous website. I filed for disability in April and literally studied everything on your site. I implemented ALL of the recommendations in an effort to get approved – letters and forms from doctors, a letter from my former boss, obtaining all my medical records instead of expecting them to get them, etc.

    I learned yesterday that I was approved! I am thrilled! I could not have done it without the fabulous information from your website. Thank you SOOOOOO much!

    Like

  38. Thank you for this website. It was a great resource for my application process. I applied and was approved on the initial application. It only took 2 months. You are helping so many people thanks

    Like

  39. This website is exactly what I needed. I was crying reading it because I’ve been feeling so overwhelmed with this illness life change stuff when it comes to disability, very confused. That website is an unbelievable resource, so well organized and the imagery takes an overwhelming subject and adds some sunshine to it.

    Like

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