Writing by Veronica Senkowski Greenfield
Art by Robin Mead
Veronica was approved for Social Security Disability in just nine months. She never had to hire a lawyer or go to a hearing. Veronica did a wonderful job of learning about the process and worked with her doctors to get the documentation she needed. She was kind enough to share her story, along with many great tips and ideas to help others with EDS.
If you are applying for disability, you may also wish to join this excellent Facebook group: Ehlers-Danlos: Applying for Disability Support Group
After several weeks of coming home from working crying and inconsolable in pain, I took the leap and asked my doctor about disability – and he said yes.
Even with the severity of my EDS, I never expected to be approved quickly because I am 24 years old and have multiple college degrees. I was approved at the reconsideration level in nine months. I had no lawyer, but I did a ton of research during the process and wanted to share my strategy and help others as much as possible.
RESIDUAL FUNCTIONAL CAPACITY (RFC) FORMS
I recommend these forms to any person with EDS filing for disability. These forms are super important. They are a way to document how all of your diagnosis, injuries, and symptoms impact your ability to work and your daily life. The RFC forms are really the biggest help I have found. They show that your symptoms don’t just prevent you from doing your old job – they prevent you from doing ANY job. There are physical and mental RFC forms. Get at least your primary care doctor to fill them both out. How to Work with Your Doctor to Get a Great RFC Form
PHYSICAL RFC FORMS
This form documents what your actual limitations are (For example: Can you sit? Stand? Lift?) You will need to prove you can’t even sit at a desk eight hours a day sharpening pencils. If you can’t sit for very long due to pain or stiffness, but also cannot stand very long due to dysautonomia and/or vertigo, write that down and include any reasonable accommodations you have tried (such as a standing desk, ergonomic chairs, etc) and why those solutions are no longer functional for you. Blank Physical RFC Form. Customized forms for specific conditions: Sample RFC Forms
MENTAL RFC FORM
The mental form goes over your mental limitations. (For example: Can you remember things? Can you process information? Can you work well with others?) Even if you don’t have mental health issues, you can get the mental form completed if pain, brain fog, or medical anxiety affect your life or health care. Blank Mental RFC Form. Customized forms with more detailed questions about mental health: Sample RFC Forms
MEETING WITH YOUR DOCTOR
All my doctors filled out these forms with me in the office with them. I made specific appointments with them just to do these forms. These forms literally go over every possible thing that could impact you working. It will help if your doctors are aware of things you can’t do (sit/stand/lift/walk/bend/write/type), so then they can note that on the forms and state which symptom or diagnosis prevents this activity. Make sure your doctors are filling them out according to your worse/bad days. If your doctor won’t do disability forms: How To Get Your Doctor to Fill Out Disability Paperwork
ASKING MULTIPLE DOCTORS
The RFC forms are a huge help. You would be surprised how much they help your case if you have multiple different doctors filling out these forms and stating your limitations clearly. Try to get your primary care doctor to fill out both forms, and any other doctors that you can as well. Ask any other doctor/specialist you see that is understanding of your conditions or supportive of your disability case. They can fill out one or both forms depending on their specialty. How to Find a Doctor to Help With Documentation.
Get copies of all your medical records that relate to your disability. Submit copies of everything to Social Security yourself. Even get dental and vision records – EDS causes trouble everywhere! Make sure that Social Security requests records from all your doctors. How to Collect Records and How to Submit Records
Lawyers are helpful, especially at the hearing stage, but by no means required for initial applications and reconsiderations. I got my approval at the reconsideration level and did not use a lawyer. How to Find a Lawyer or How To Apply Without a Lawyer
If you fall from your vertigo or get dizzy/syncope/presyncope, look into getting a rollater/walker with a seat or any other medical equipment you need. It helps quality of life so much (no more passing out in the checkout line!) and also it does help your disability case if you are prescribed and use a mobility device. Also, if you have issues in your ankles/knees/hips from EDS the rollater can be a lifesaver on bad pain days to help you be up and about without fully bearing your weight on a problem joint. I had medical records that mentioned my walker/wheelchair/cane, as well as any braces or splints I was wearing at the doctor’s visit. Important: If you need medical equipment, make sure you get a prescription or assessment from a doctor so it is documented. How to Document Medical Equipment.
If you have ever had any kind of accommodation for your disability, you can write this on your work history forms and also submit documentation. I had email messages from my lead and boss stating that I couldn’t do certain tasks. I also submitted my communications with Human Resources from when I was laid off because they could not reasonably accommodate my conditions. You can do this even if the accommodation was minor or unofficial (For example: Not having to do certain tasks because of lifting limits, or being able to take extra breaks for anxiety, or taking extra sick days). How to Use Workplace Documents to Help Your Disability Case
When filling out forms, put every single diagnosis and all tests and imaging. Everything that might contribute overall to your health. If you ever had accommodations for disabilities at work, make sure to point that out on the work history forms. As mentioned above, get your doctors to do physical and mental RFC forms and submit those. They are incredibly helpful. How to Fill Out Forms and Answer Questions for Social Security Disability
Tips for medical tests:
🌷 If you have any problem with joints, get CT Scans or MRIs of them. Joint problems in EDS do not show up on x-rays, but correct imaging can reveal a world of problems.
🌷 If you have issues with your hands, get checked for neuropathy, carpal tunnel, and hyperextension. Proving issues with your hands might be the tipping point on your case.
🌷 If you have problems with breathing, find an asthma doctor who can give you full breathing testing. My allergist tests and treats my asthma.
🌷 If you have major joint issues, try to get as many different CT/MRI scans as possible. My MRIs for both shoulders and both hips made a difference.
🌷 Look into functional cardiologist tests including tilt table and exercise stress tests
🌷 Blood tests showing issues with blood volume and vitamin levels
🌷 If you haven’t been checked for POTS, you might wish to look into it because it can occur with EDS.
I’m in a bunch of EDS support groups, it has helped me come to terms with this condition and my limitations. It also has given me an outlet where I can help others, if only by sharing encouragement, advice, and my experiences with others affected by this condition. I am honored to share my experiences here and hope that my story and advice will help and encourage others with Ehlers-Danlos Syndrome or similar conditions going through the process of applying for Social Security.
What Do You Think?
Learn more: The Sleepy Girl Guide to Social Security Disability
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12 thoughts on “How I Got Approved for Disability for Ehlers Danlos Syndrome”
I have EDS, POTS, MCAS, GP and dysautonomia. I’ve been in the reconsideration phase for over 6 months. It took a year and a half to get my initial denial. I’m hoping it’s because of the pandemic that it’s taking so long. I did submit letters from my PCP, PT, pain management doc, old PCP and my husband to prove I’m disabled. I’ve completed three RFCs and a disability examination. My advice is to request to see your own doc because their doc did a very half butt job. I’m so tired of waiting and being stuck in limbo. I want to start my life already!!
I am brand new to the world of EDS. I literally just read about this disorder last night, when an online article about a woman with “hyper flexibility and joint problems” discovered she had a rare syndrome called Ehlers-Danlo Syndrome. I have always been seen as someone with a body that was not quite normal. I have always had abnormally low muscle tone, very bendy limbs and joints, tiredness, anxiety, depression, and intestinal issues (starting in teens) and cervical instability in my neck (starting in 20s). All my myriad complaints made me sound like a whiny hypochondriac, and I learned to keep my mouth shut about everything that was wrong all the time. I have needed constant chiropractic adjustments for the past 30 years to keep my neck moving and lessening the constant pain. My digestive issues have ruled my life and caused a lot of depression and anxiety,, especially with the awful treatment by unsympathetic doctors when I was young. I have “powered through” my life through sheer force of will and have been able to get a higher education and work full time throughout most of my adult life, but in the last year I have really felt my body aging and I don’t know if I can keep it up. I am so exhausted all the time. I am so glad I found helpful resources on the internet! I think I first need to confirm an EDS diagnosis. What is the specific genetic test I need to get? Thank you for your help.
Osteopaths (Doctor of Osteopathy, D.O.) can put ribs back in place. Please consider finding one in your area
I want to offer hope that you can get an approval on the first try without a lawyer. I applied on behalf of my daughter’s 29 year old partner who has two types of Ehlers Danlos Syndrome, Classical and Dermatosparexis. She also has Cranial Cervical Instability and very recently was diagnosed with Epilepsy and POTS. She has IBS too. We were shocked to get the approval 5 months after applying online. It can happen! I had read many articles from others and this one was very helpful.
If your daughter’s partner is who I think she is, then all three of you are amazing women. There is a model with both of those EDS subtypes who is so well-loved in the EDS community.
Im a 51 yo paralegal who was diagnosed w EDS 5 years ago by my 15 year long pain physician & friend following 2 cervical fusions. When “the rest” of me started to fall apart, at his urging, I began treating with a multitude of docs of various specialties & ALL (8-9) disagreed w him or were unsupporting at best w his diagnosis. I had to stop working & because Medicaid wouldn’t cover his charges, he treated me for free for YEARS! He supported my SSD claim (for my cervical fusions bc of lack of EDS support from other docs) spending hours completing functional capacity forms. SSD denied & we exhausted all appeals. I was forced to return to work for the last 1 1/2 years. 2 weeks ago, I asked the law firm to be moved to an open receptionist position that would allow me to spend less time sitting, holding my arms up typing, MUCH less stressful responsibilities than being a paralegal (I’ve been one over 20 years). My memory, focus, word association issues have been a huge issue for several years. Instead of accommodating me, they let me go. I have periodontal EDS & my mom has kytoscolotic EDS. We have 4 generations of documented family members with NOW we know was/are multiple classifications of EDS. In this now “anti-opioid” world where physical therapy is THE THING (but not often helpful for EDS) I feel even more alone than ever & judged horribly for doing whatever it took to simply help SOME of the pain & the most unbelievable fatigue one can ever imagine just so I could work & live independently & not be a burden on my family. I’m terrified that SSD will reject me again but I HAVE to try & I can’t thank you all enough for the outstanding articles, helpful instructions, & true words of Zebra encouragement! I’ll keep everyone posted!
Hope it goes great for you. Thank you for sharing this. 🏵️ 🌼💛
Do you have to wait six months after ending work before you apply?
I am going through the same thing. I have all my documentation but I can hardly think straight to finish the paperwork. I have been working on it for 3 months now. I am believing I can finish it.
I just wanted to make a post for my gratitude to anyone or everyone who is writing on here. If it wasn’t for all the information here I really don’t think my claim would have been accepted and this site acted as a sense of reassurance and hope while I was at a very helpless and destitute point in my life.
I recently had my claim accepted and wanted to say thanks. Not to be dramatic but you may have saved my life.
Wow! I fell I could have been the author of this page. I am 54 year old male with EDS. THe info you have here is very very helpful. I am beginning the first stage of filing with SS.
Thank you foe this website, I have bookmarked and plan on spending my evening here. I am currently in the ER with an injury I got 4 weks ago, where my chest was pushed and rib cage flexed in and out. ANd of course does not show up on Xray. I have a great ortho dr but she specializes in neck and back issues which are where most of my probs are happening. This is my 3rd visit to ER in 3 weeks. THey are finally stating to believe me but still no proof. Thank god they just gave me a shot of Morphine after laying here in agonizing pain for 4 hours. THe shame and comments you get from these people make me afraid to come to ER. GOd Bless You! THank you for all the great info on the SS claims. GO ZEBRAS!!