How I Got Approved for Disability for Ehlers Danlos Syndrome

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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


VERONICA’S STORY

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 too long due to pain/stiffness, bring that up and mention that you can’t use a standing desk to accommodate for that due to vertigo.  Blank Physical RFC FormCustomized 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

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.

MEDICAL RECORDS

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

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

MEDICAL EQUIPMENT

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.

WORKPLACE RECORDS

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

DISABILITY FORMS 

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

MEDICAL TESTS

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

Updated January 2019. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

1 thought on “How I Got Approved for Disability for Ehlers Danlos Syndrome”

  1. 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!!

    TIm

    Like

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