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By: Chelsea Goldstein, Dysautonomia Information Network

IMG_RedTape.jpg.b979cfaec88caea0c30b572728a2b46b.jpgPerhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week.

If this sounds like you, you may be at the point of considering disability support and benefits. Pursuing disability benefits can be an overwhelming and emotional process. This article is meant to be a guide to help you make a decision that is right for you, and provide you with a place to start understanding the process of applying for disability.

The Decision to Leave Your Job is an Emotional One

And that’s okay. 

1. Talk It Out. As you labor over the decision to leave your job due to your health, it may be helpful to get input from friends, family, and your doctor. They can provide perspective on whether leaving your job permanently is a wise decision, or if a temporary reprieve may be more appropriate. A trusted doctor may be an especially important person to talk to because their support will be helpful during the disability application process. Just make sure that the people you talk to are supportive of you and aware of your condition. You do not need someone making you feel bad for not being able to get through a typical workday. Also consider seeking support outside your immediate network. Some therapists are trained to work with people with chronic illness, and the DINET forum is a great place to connect with others who have dysautonomia (1).

2. Accept Your Emotions During This Process. Choosing to leave your job can bring up a myriad of emotions including grief, loss, anger, fear, and feelings of failure. Accept that you will feel many of these things, and that is okay. Remind yourself that these emotions will pass. Many people feel an overwhelming sense of relief once they leave their jobs and focus on their health (1). 

3. Be Intentionally Engaged. Make sure you have a plan to feel a sense of support and community once  you leave your job. This could mean being more intentional about connecting with friends, even virtually, or finding new communities, such as support groups. Finances may become tight when you leave your job, so seek out ways to stay engaged for free or cheap, such as pursuing hobbies at home (as you are able), making reading goals, and spending time outside (1).

4. Maintain Purpose. You may feel a blow to your self-esteem as you leave your job. Try to prepare for this by making sure you still feel purpose. You could write a blog to process your feelings and help others, you could become active in a support group, or mentor someone who is newly diagnosed with your condition. Today, there are many ways to volunteer that can be done from home. If you aren't sure how to give back, a good exercise is to think how you would spend your last day on earth. Use your answer to figure out where to best invest your precious energy (1).

5. Be Prepared. Knowledge really is power. The decision to leave your job and pursue disability will be made easier if you feel prepared to make the transition. You should get an idea of what options you may have for disability pay before your paychecks stop coming in. The rest of this article is a good place to start (1).

Social Security Disability Insurance & Supplemental Security Income

Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) provide financial support for individuals living with disabilities. Eligibility for both programs is determined by your financial and medical situations. The major difference is that SSDI is available to people who have accumulated enough "work credits" to qualify, while SSI is for individuals who have limited income and who have minimal, or no, work history (2).

Medical Eligibility: The medical eligibility criteria is the same for SSDI and SSI. 

  1. Individuals must be considered "permanently" disabled to qualify for both programs. This is defined by an individual's disability having lasted (or is expected to last) for at least one year. SSDI and SSI do not provide temporary disability benefits (3).
  2. Your condition(s) must be considered severe and prevent you from working at any of your past jobs, as well as prevents you from working in a less physically or mentally strenuous job that you qualify for (4).
  3. Some conditions qualify for SSDI and SSI by meeting the strict requirements in the Listing of Impairments. Dysautonomia is NOT in the listing.
  4. You can still qualify if your condition(s) are not in the listing. You need to supply evidence that your condition causes severe functional limitations that limit your ability to do activities such as lifting, standing, walking, sitting, and remembering (4).
  5. A lawyer may be a good resource to help you navigate the disability application process especially if your condition(s) are not in the listing. Disability lawyers in each US state can be found here.

Financial Eligibility The financial eligibility criteria is different for SSDI and SSI. 

  1. Your income must be limited. If you earn $1,260 per month or more in 2020, you are considered to have "substantial gainful activity" and are not eligible for either program (3).
  2. SSDI requires you have enough "work credits". The amount of required work credits varies with age. Work credits are calculated by how long you have paid income taxes, and how long ago you last worked (3). You can calculate your eligibility here.
  3. SSI is available for people with limited assets and too few work credits. SSI does have strict income restrictions and you cannot have more than $2,000 in assets (with some exceptions). The general federal rate is $783/month, but the amount you get may vary based on your home state and your total household income (5). You can calculate your SSI eligibility here.

Other Things to Consider

If possible, take time to learn about your options.

Medical Coverage. SSDI and SSI are not medical coverage. If you currently have medical coverage through a job, research how long it will last, and at what cost, if you leave your position. You will be eligible for Medicare if you receive SSDI, but only after a 24-month waiting period. You may also qualify for Medicaid, in the meantime, if you meet specific income restrictions. These vary by state (1).

Application Process. Be prepared for a lengthy application process. Many people get denied on their initial application, so it may be good to plan for this. You may have to file an appeal, and denied applicants have a better chance at a hearing (1). Again, you may want to consider talking to a lawyer as you begin your disability application process. Here are several resources, worksheets, and checklists to help you prepare for a disability interview. Adults over 18 who are not receiving Social Security benefits, have not been denied SSDI in the last 60 days, and who cannot work due to a medical condition can apply online.

Additional Support. You should consider other avenues of financial and medical support if you live with a disabling condition. These avenues of support could hold you over during the SSDI application process.

  1. State Disability Insurance. Some states offer temporary disability benefits that will cover a percentage of your salary (6).
  2. Company Disability Insurance. Some companies offer temporary disability that typically cover a percentage of your salary for six months (1).
  3. Pension/401K. Some pensions/401K plans can be accessed early without penalty due to disability. Check the rules of your pension or 401K, if you have one.
  4. Other Federal Programs. There are other federal programs to help individuals with housing, taxes, medical bills, and to help veterans. This page is a good place to start.
  5. Support for Children. Your children may also be eligible for benefits if you receive disability support (7).
  6. Other Countries (not USA). Some countries have Disability Living Allowances, and may even have support for caregivers (1).


Figuring out what disability options may work for you can be a daunting process. But, the more you know, the more you will be prepared for the transition. If possible, take some time to review your options. These resources may be good places to dig deeper.

Article Citations

  1. Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/
  2. Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html 
  3. Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html 
  4. Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html 
  5. You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf 
  6. State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance
  7. Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3 

Additional Resources

  1. Apply for Social Security Online. https://www.ssa.gov/disabilityssi/ 
  2. Disability Secrets. http://www.disabilitysecrets.com/ 
  3. Life After Work, When Chronic Illness Makes You Quit a Job You Really Love. https://creakyjoints.org/blog/lifeafter-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/ 
  4. National Organization on Disability. http://www.nod.org 
  5. Online Lawyer Source. http://www.onlinelawyersource.com/social-security-disability/index.html 
  6. Social Security Administration's Adult Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm 
  7. Social Security Administration's Child Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm 
  8. Social Security Administration, Disability. https://www.ssa.gov/benefits/disability/ 

NOTE:  this article is available in pdf format below.  Printed copies for support or community groups are available by request to webmaster@dinet.org  Please include the purpose, name of the group and number of copies requested.


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I was diagnosed with autonomic dysfunction almost a decade after I began experiencing extreme pain thanks to small fiber neuropathy. But my real pain began when I filed for disability in 2013. By this time I had to close my sporting goods stores as I could no longer effectively manage my business.

My initial application included signed SSI documents from each of my physicians. All stated that I would never be able to work again. This application was denied after many months of delays. I quickly filed all required documents which led to the day when I was seated in front of an SSI administrative law judge. All seemed to go quite well and then the earth fell from beneath my feet. The ALJ determined that I am a con artist and was able to get half a dozen respected physicians to file false statements with the federal government in support of my claims. It took six years to find that the federal government simply will not let college graduates to claim that they cannot work. I immediately initiated the process of challenging these findings. However, given that I had already been seen by an ALJ no law firms would take my case. I was left with few options.

I decided to sue the head of the social security administration; pro se. With no background in the law I decided to take on the federal government and all of their attorneys, on my own. Suffice to say I spent hundreds of hours studying. Almost 2 1/2 years later...I won!!! Not so fast, my victory simply sent me back to the Social Security Administration to once again be seated in front of the ALJ to plead my case. Fortunately, my ALJ had retired and I was sent to a different ALJ. This hearing was quite a different experience. Before I was allowed to present my case, the ALJ declared that I was obviously permanently disabled. He determined that my disability began on an arbitrary date, some 150 days after my initial disability insurance claim.

Goliath can be beaten. However, the process is excruciating. Never give up.


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My son is 25. He was a mechanic/welder by trade. We just got his first denial and we have an attorney already. Apparently there’s some magic job where you don’t have to have a drivers license (my son also has Epilepsy on top of his Dysautonomia, and severe depression, anxiety & ptsd) you can call in on whatever days you didn’t seize all night, or don’t feel like you’re going to pass out and aren’t on the toilet all day. 🙄

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