How I qualified for SSDI with rare and invisible disabilities

At the end of 2020, over 8.1 million people were receiving some type of social security disability. That may seem like a lot, but the chances for approval are actually very low.

I'm sharing my story from application to approval, including the rare and invisible illnesses that I have and was approved for.

Some facts about Social Security Disability (SSDI)

According to the Social Security Administration website,1 in 2020, their offices received over 3 million applications from disabled workers. Of those, 35.25% who applied via a field office were awarded benefits, while, 52.85% received benefits who were processed through a State Disability Determination Services office (presumably, they applied online, via fax, or mail). 

Disability is not something that only happens as people get older. Illness and injury do not discriminate based on age. While the number of disabled workers receiving benefits from Social Security certainly increases with age, Social Security reports that 1785 people in 2020 were aged 20 and younger who received benefits. 

According to their website, Social Security Disability is only reserved for people with the most severe conditions, whose illness limits their ability to both continue to work at any job they previously held AND any other job available. It is not an enjoyable position to be in--trust me on that. Here is a quote from that site: 

"Because the Act defines disability so strictly, Social Security disability beneficiaries are among the most severely impaired in the country. In fact, Social Security disability beneficiaries are more than three times as likely to die in a year as other people the same age."3

How I came to apply for SSDI

In 2018, I was working full-time. At that point, I had already been diagnosed with Joint Hypermobility Syndrome, which is on the same spectrum as Ehlers-Danlos Syndrome, and Vasovagal Syncope, which is a type of dysautonomia. In addition, I had migraines that were getting worse and a lot of stress. All of my symptoms were becoming more disruptive to my life. Despite the difficult financial position it might put my family in, I decided to leave my high-paying job with benefits at the end of that year.

For a few months, I tried to do freelance work. But I continued to decline, so by April 2019, I was not working at all. Upon the advice of some people in a support group, I decided to apply for SSDI. They told me it was a long process, and it was best to apply early because there was a waiting period involved.

So that May I filed an application. I did it myself, without assistance from an advocate or attorney. I listed over a dozen diagnoses on my application. I tried my best to request medical records from as many sources as possible, but some of them were quite old and many, I couldn't remember the names of where I went. They were from a period where I'd lived in several places and seen many doctors, trying to get help and figure out what was wrong with me.

Not surprisingly, I was denied on my first try. As you saw above, the statistics are not in favor of the applicant getting approved. Plus, it took a lot of work and energy that I didn't have the spoons for. So I decided to consult an attorney.

How the application process works

The attorney I met with specialized in SSDI cases, and after interviewing me, he felt I had a strong case. I signed a contract with him and he appealed the case. But more importantly, he explained what to expect.

When someone files a disability claim, it goes to a claims examiner for review. This examiner takes the forms you fill out and your medical records, and compares them to the categories of disability that the Social Security Administration has created. I read somewhere that an examiner spends an average of 12 minutes reviewing a claim. Also, they are not healthcare professionals; they're Social Security employees. Can you see why it's so common to get rejected?

Because my medical conditions did not fit into the categories laid out by Social Security, my attorney told me that my claim would once again be rejected. At that point, we would ask for reconsideration at court by a Social Security judge. It's a required step, so you have to do the appeal before you can ask for a hearing.

The Social Security courts are very, very busy, and so it would be a long wait until I was seen at trial. My legal representative wanted to ensure that I understood this wasn't a quick fix, and if I needed to go back to work, then they could ask for a close date on the case. That way, if I won the case, I could still be awarded for the time I was unable to work.

I explained that I didn't anticipate getting better anytime soon, so there was no way for me to go back to work regardless of what I wanted or needed to do. So I would just have to wait. Luckily, we had been living well below our means for some time, so we had a good amount of money in savings. My husband was still working, but he is self-employed and has his own health problems that interfere with working.

During the long, long wait for a trial, I didn't have to do much. I signed some releases and my attorney's office worked to collect updated medical records. I was instructed to keep attending doctor's appointments as usual, and to adhere to any medical advice I was given unless I was physically or financially unable to do so. Occasionally, I got a communication from Social Security, and they would walk me through what to do about it. 

During the appeal period, I had moved and now had access to better healthcare providers. The diagnostic criteria had changed, and therefore my diagnosis was changed from Joint Hypermobility Syndrome to Ehlers-Danlos Syndrome. I was retested and instead of Vasovagal Syncope, I now had POTS (Postural Orthostatic Tachycardia Syndrome). I received some new diagnoses as well: Visual Snow Syndrome and Small Fiber Neuropathy.

The attorney also asked my husband to write a letter to the judge discussing his perceptions of my limitations and symptoms. Additionally, my lawyer interviewed my primary care physician and helped her draft a letter stating what she felt my limitations were.

Finally, my hearing was coming up, for July 2021. My attorney helped me prep during a phone call several weeks before the date. He told me what kinds of questions would likely be asked of me, and I wrote down notes to refer to that could help with both my memory and anxiety. My psychologist also worked with me to develop tools and practices to keep me as prepared, relaxed, and comfortable as possible.

The hearing was done as a conference call because the courts were not open to the public due to COVID. My attorney called me about 30 minutes before the start of the hearing to review the questions and tell me again how the hearing would proceed. Right before our start time, we hung up because the judge's staff would be calling us separately.

After being sworn in, the judge asked me some basic questions about my symptoms and how they affected my life. She also asked if I could drive or had a driver's license (the answer was no to both). She asked how I got around, and if I had worked or had any income since my application. My attorney told me he would ask me additional questions if he felt it would help clarify things, but I don't remember what he asked.

During the next part of the hearing is the portion where the judge questions a vocational expert about my work history. I was told by my attorney that I would only have to sit and listen. Unfortunately, the expert was poorly prepared, and that didn't sit well with the judge. So to keep things moving, she asked for my input several times. It was stressful, because I wasn't prepared for this part, and I had to try to remember details about jobs I held several years ago. I just did the best I could. There were also a lot of terms being thrown around between the judge and vocational expert that I didn't understand. I tried not to worry about it and did not add any information that wasn't specifically requested.

After they went through my work history, the judge asked for the expert's opinion about whether I could do any of my previous jobs. He said no. She then asked if there were any other jobs I could do. He said no. He explained that in his decades of experience, employers frowned upon employees being absent from work two or more days per month. He was referring to a statement from my doctor's letter, which said that my conditions would cause me to miss work at least two days per month.

At that point, the judge said something like, "I declare you disabled. The office will call you. Please take very good care of yourself."

Here's where things got confusing for me. The entire hearing was about an hour, and now it was over. Had I won? My attorney had said that judges rarely, if ever, make judgment during the hearing. You usually have to wait weeks or months for an answer. But she said I was disabled. I couldn't really remember, but I thought maybe he said that she might say something like that at the end, but it didn't necessarily mean we had won.

My memory is not the best anymore. I could have reached out to my attorney for clarification, but I was frankly very exhausted. I decided to just wait. My husband also wondered why the attorney or his office never contacted me afterward to say how he thought it went. I'm sure they had already moved on to other clients. Not in a bad way, but just that they were busy.

Anyway, only a few weeks later, I received a letter from Social Security. It was the judge's decision, and I was approved! She detailed all the reasons, including that my own report of symptoms matched up with my medical records and the doctor's statement.

In this letter, I also discovered that an independent psychologist had reviewed my records from my therapist. They decided, just from reading my therapist's notes, that my psychological symptoms were not disabling. This annoyed me a lot. I didn't know they were going to give my records to someone to look at without asking or telling me. Also, none of those notes were formatted as an evaluation of whether I'm disabled. They were simply whatever my counselor documented in her attempt to help me. Lastly, how could they really decide my state of mind without even talking to me? If this hadn't occurred during COVID, maybe things would be different. But luckily, this evaluation did not change the judge's mind about my disability.

Tips and recommendations

1. Get a good attorney, and listen to their advice. As I mentioned before, I listed over a dozen diagnoses as reasons for my disability. But my attorney felt that just 2-3 main issues were sufficient to prove my case. He said that between my daily headaches, chronic body pain, and POTS, it would be enough to establish disability. He was correct. He also had presented cases before my particular judge many times before and was able to give me tips specific to how she worked, to ensure that I formatted answers in a way that would prevent her from getting frustrated with me. It was also extremely helpful to have his staff take care of submitting any documents the court asked for. Most people who are severely injured or chronically ill are probably going to have trouble concentrating, and the time and effort required to handle all of these inquiries yourself will probably be exhausting.

2. Expect the process to take a long time. This is not an option if you are in a financial emergency. You should still apply but look to other resources for immediate help.

3. Don't stop receiving medical care. Social Security must see that you are continuing to attend doctor's appointments and adhering to any treatment plans prescribed to you. If it looks like you're just languishing at home and letting yourself get worse, then it doesn't help your case. Also, make sure that you are being seen for the conditions that you have listed on your application. Double-check your medical records and ask your attorney how to correct them if you find errors.

4. Don't wait too long. There is a deadline from the last date worked to apply for SSDI. I believe it's 5 years.

5. Try to find emotional help during this journey. If you don't have friends or family who provide positive reinforcement, consider getting counseling, if you can afford it, or joining a support group. You need to have people who believe in you, believe in the seriousness of your health conditions, and will be there for you when you're struggling.

6. Don't hesitate to fire your doctors if they aren't helpful. It took 42 years for me to be diagnosed with Ehlers-Danlos Syndrome, a condition I was born with and exhibited symptoms of from a very young age. I found that the foundations for my conditions (or conditions I think I have) and support groups are great resources for referrals from actual patients. They often ferret out doctors that may not be listed in directories.

7. An attorney will take a cut of your back pay. Normally, it's 25% of back pay with a cap of $6000. Then your monthly payments are your own, and not shared with the attorney. For me, it was totally worth it. I don't think I had the knowledge or stamina to win the case on my own.

8. When you get approved for SSDI, you will also be automatically enrolled in Medicare. If you continue to have any other insurance (such as Medicaid or private insurance), that will become secondary. 

9. Getting approved doesn't necessarily mean you will stay approved forever. Social Security may re-evaluate your case after three, five, or seven years, depending on how likely they believe it is for you to have improved during that time. You must continue to receive medical care and take care of yourself during this time, because, at the next evaluation, you may lose your benefits if there isn't evidence that you've been trying to receive treatment. 

10. Even though they just agreed that you can't work, Social Security will encourage you to go back to work. They have a "Ticket to Work" program that is supposed to help you find a job that would accommodate your disabilities. My understanding is that you can work for up to 9 months without losing your benefits.

How my life has changed now that I'm "officially" disabled

The judge declared me disabled as of April 2019 (the date I started as my date of the disability). According to their policies, there is a six-month "waiting period" from the date of disability until SSDI benefits begin. So, I was paid back benefits from November 2019 through the month when I finally received my first payment, which was September 2021. That same month, I also got my first monthly payment. This was all a relief because we had so little savings left.

However, it also will change a lot of things for us financially in a negative way. For the previous 2+ years, my husband and I were on Medicaid and had also been receiving SNAP benefits (formerly known as food stamps). Our income was so low, almost non-existent some months, that we were receiving enough money from SNAP to cover all of our food needs every month. Plus, Medicaid covered all of our medical costs.

SSDI benefits are based on your work history. You get in what you paid out. So the longer you work, and the more money you made when you were working, the higher your monthly payment will be. I worked for over two decades and especially toward the end, I made a lot of money. So my SSDI payments were high enough that I was told we would lose our SNAP benefits due to our new income level.

It also meant that, eventually, both my husband and I would also lose Medicaid. Currently, there are mandates in place where I live that suspend all cancellations on health insurance. As long as this order is in place, we will continue to have Medicaid coverage. While the mandate is in effect, my husband's coverage does not change, but mine becomes secondary, and I lose the prescription benefit portion of Medicaid. 

I was automatically enrolled in Medicare Part A (hospital insurance) and Part B (medical insurance) as my primary insurance effective 10/1/21 as part of being on SSDI. I had to also enroll in Part D (prescription drug coverage) to pick up the slack when Medicaid stopped covering prescriptions. I was able to find a Part D plan that has a premium of $0 and covers most of the medications I currently take. I made sure that it at least covered the most expensive drugs.

Because I qualify for Medicaid, they will pay my Part A and B premiums, which amount to about $150 per month. I also was automatically enrolled in a Medicare program called Extra Help.4 This program means that I pay fixed amounts for medications that are much lower than the deductibles and copays I normally would. This is why I'm able to be on a $0 premium drug plan, which otherwise might not have the best coverage.

As for medical care, Medicaid backs up Medicare, so at this point, I don't anticipate any out-of-pocket expenses for the care I've already been receiving. I didn't have the money to pay for care that wasn't covered, so I never opted for non-covered services. Therefore, everything should continue to be covered at 100%

However, at some point, I will lose Medicaid and Extra Help. Then I will need to upgrade to a more comprehensive Medicare coverage. I will be responsible for those $150 in Medicare premiums, and/or whatever premiums I have to get enough coverage. I will also start to pay more for medications.

Additionally, my husband will lose Medicaid coverage. So we will have to find insurance for him as well.

Lastly, depending on what our overall income is between my SSDI benefits and my husband's self-employment income, I may have to pay taxes on some of what I receive.

In conclusion, I could end up spending as much as half of my SSDI benefits on increased expenses and taxes by the time all is said and done. So it's better than nothing, but it isn't as much as it seems like at first.

As for what I do differently since SSDI started, the answer is nothing. My disabilities are severe. I'm mostly home-bound and bed-bound. I can't leave the house by myself, I can no longer drive. I use a walker or my husband pushes me in a wheelchair. I can't concentrate, I'm in pain constantly, and I'm exhausted because I don't sleep for more than a few hours at a time. If I stand too long, I will get dizzy and possibly pass out. SSDI didn't give me access to any miracle cures. I applied because this was the best choice to keep or possibly improve my family's life. It's a system I paid into for many years while I worked, and even though I was undiagnosed, I was working while I had these conditions. I held on as long as I could, but there came a time when I just couldn't keep working.

I do plan on seeing if there is any treatment I haven't received yet that might help me. There have been some things that we couldn't explore because it wasn't covered by Medicaid and I couldn't afford to pay for it myself. I also have some conditions that my doctors and I suspect I may have, but I haven't been diagnosed due to financial and insurance coverage barriers.

In the end, I hope that SSDI will help me feel better. Even if it's just a little bit better. I feel fully not functional right now.

What SSDI does for me is provide some income replacement for my family. It is nowhere near what I was making when I could work. Remember, your SSDI benefits are commensurate with your previous income. So you will never make more money on SSDI than you were at your best income in a job. But if you are making $0, then it should at least help a little bit.

Changes I would make to my journey to SSDI

I don't regret applying for or receiving SSDI. There is a sense of validation, especially considering how many rare and undiagnosed conditions I have. When I say I'm disabled, I have the government backing me up now.

I don't know what will happen when I'm re-evaluated. Maybe it's crazy, but I would rather feel well and be able to work than be disabled. I know that lots of people think that someone on SSDI is "lucky," but they are largely uninformed and have clearly never known what it is to have a chronic illness. Now that I know how the system works, I can see that approval is usually based on clear evidence of the facts and proper documentation of one's disabilities. The only place where luck may be involved is if you're assigned a reviewer or judge who seems to rule favorably more often.

Although Social Security only cares about disability in terms of one's ability to work, I lost so much more than that. I can no longer leave the house for more than a few minutes without having a severe flare-up. I've lost a lot of independence, and become a source of worry and burden for my husband. I don't have the energy to socialize, engage in any of my hobbies, or do basic chores around the house. 

So not being disabled would mean so much more to me than just working. I could get my life back.