It feels like just yesterday I was sitting inside my local Starbucks, scanning all the documents I could find, desperately trying to learn about what disability benefits are, how to apply for them and what information I would need to get Social Security Disability as someone who can no longer work because of chronic migraine.
The Social Security website has an abundance of information, but sifting through it and actually understanding it isn’t easy. There’s also a lot of misunderstanding revolving around SSI (Supplemental Security Income) and SSDI (Social Security Disability Insurance) that makes reading through the documentation and getting answers from other people in a similar situation very difficult.
In an effort to help people better understand the process and what to expect, I wanted to share my personal experience with applying for disability as someone with chronic, debilitating migraine.
Where did I begin?
The process itself started in the summer of 2018, when I started doing research into migraine and if it could be considered a disability. I found a wide range of answers.
In short: yes, migraine is considered a disability under the neurological adult category of conditions. But in reality, the majority of people with chronic migraine do not find luck receiving disability benefits, or they spend years appealing decisions and working with lawyers in order to get approved. Unfortunately, this lengthy appeal process has no rhyme or reason, as people with the most permanent of conditions and terminal conditions often spend years going through it as well.
My personal experience of applying and being approved for Social Security Disability on my first try without the use of a lawyer is rare – which to me is all the more reason to share exactly what I went through.
I initially avoided the idea of actually applying for disability benefits. I was OK at work, but at home I spent hours writhing in pain and was unable to function when not forcing myself to be OK at work. Before calling it quits, I had a serious sit down with my boss, explaining the worsening of my condition and how I thought I would benefit greatly if I could reduce my hours.
Reducing my hours showed me one thing: I was still forcing myself to be OK at work, and although I was home more often I was still absolutely unable to function. This lead to me giving my two weeks notice, and eventually having to call out prior to completing the two weeks because I simply couldn’t force myself to get up.
I determined that if I couldn’t work two-and-a-half shifts at work, I certainly couldn’t manage four days of classes that would be starting back up. I moved home two weeks later where I could be under the care of my parents.
After moving home, applying for disability was the only option that made sense, despite also having just started a new migraine medication.
Step 1: Intensive Research
And so the most valuable part of the process begins not with applying, but in understanding what “disability” is in terms of receiving assistance.
Section 11.00 Neurological Adult (Part A), Subsection G – this section is key in understanding how migraine and disability go together.
There must be a limitation of at least one-quarter of mental functioning:
understanding, remembering and applying information – in migraine we see this with cognitive issues and brain fog
interacting with others – in migraine this can be impacted by aphasia or sensitivities to light and sound.
concentrating, persisting, or maintaining pace – in migraine it is common to have difficulty concentrating during an attack. You also need to take more breaks and rest often meaning you cannot always persist and your pace will be much slower and inconsistent depending on pain and symptom levels.
adapting or managing oneself – this one is more vague, but deals with your personal ability to manage tasks on your own, including completing physical activities. This concept applies to being able to do so on a consistent and sustainable basis, and with varying migraine attacks consistency is not a given. The level you are able to sustain work is also not necessarily the same level the business needs to sustain the business.
Section 3 lays out the definitions of physical functioning and mental functioning.
Physical function is related to: the ability to see, breathe and swallow; the ability to balance while standing; the impact of pain and fatigue.
Mental function is related to: the ability to understand and learn, describe work activity, and be able to use reason and judgment to make work related decisions; irritability; the ability to sustain an ordinary routine with regular attendance without needing more than the allotted rest period.
The final note comes from Section 4 which describes how signs and symptoms may impact your ability to function in the workplace in addition to the effectiveness of treatments.
This digs into persistence of symptoms; frequency, duration, and intensity of symptoms; and exacerbated periods versus remission periods of symptoms. In relation to treatments, it describes any side effects of medications that may interfere with one’s ability to work.
The guidelines on the Social Security website primarily demonstrate how a condition can be deemed too disabling to work.
Step 2: The Application Process – Part One
The application for disability can be filled out online, can be printed and mailed in, or may be filled out at your local Social Security Office. I chose to fill out my application online.
Prior to starting the application you will need the following information on hand:
SSN and Proof of Age
Names, addresses, phone numbers of doctors, case workers, hospitals and clinics where you were treated AND the dates of visits.
Names and dosages of current medications – note, you will want to have the information for medications you’ve tried as well that you are no longer taking.
Medical records that you have in your possession – they will contact any place you do not currently have records for.
Lab and test results
Summary of where you worked and what you did – it also helps to note any accommodations you received from workplaces in addition to any changes you had to make to your schedule or type of work due to migraine.
Most recent W-2
You will be prompted to apply for both SSI and SSDI — do this.
I personally applied for both and was denied SSI because it has strict requirements for how many total assets you have in your bank and in any investments. At the time, it was $2000, which I was over by a few dollars.
SSI is an excellent option for those who do not have any assets, and you can receive both SSI and SSDI in some cases. In addition, receiving SSDI requires a certain amount of work credits. If you have not worked long enough to have accumulated these work credits, you will only be able to apply for SSI.
While filling out the Social Security Disability benefits application, I put careful detail into the sections regarding each doctor/healthcare professional. As applicable I included treatments we tried and included a reason for each medication that was stopped. Here’s an example:
Treatment Received: “Medications tried included: Nortrypityline (no result or improvement), Topamax (severe allergy), Verapamil (no improvement), Cambia (severe side effects), Migranal (no improvement). We had regular evaluations to work with new combinations of medications, worked on creating a food diary to identify potential triggers, worked to monitor sleep habits and keep them consistent, and evaluated stressors in life and worked to find ways to eliminate and reduce them.”
I had a total of five doctor/healthcare professionals that I listed with the dates of treatment and description of treatment received. I had two hospital/clinics listed documenting instances I was in the ER for migraine-specific treatment. I had five tests listed showing migraine-related scans and bloodwork.
At the end of the Social Security Disability benefits application there was a space for remarks. I used this space to document changes in my work history that were due to migraine. This included changing the type of work I was doing and also the reduction in hours and eventual resignation from my position where I listed the specific symptoms associated with migraine that prevented me from continuing work.
It took a few hours to fill out this application and get everything submitted.
It is very important that you print a copy of everything to keep for your own records.
Step 3: The Headache Questionnaire – Application Part Two
Roughly two weeks after submitting my initial application, I received mail requesting more information.
This section contained 10 questions specific to my headaches, symptoms, medications, hospital care, specific diagnosis, and most importantly the impact on my daily life, routine and ability to work.
The first nine questions were all extremely straight forward and were seeking general information about my migraines. It would be a similar set of questions I would be prepared to answer in a new patient appointment while seeking treatment for my migraines.
The final question regarding the impact of migraines is what stood out most to me, and I believe it is the reason my application for disability benefits was approved.
Disability isn’t simply about if you can perform at work or not, it is a whole picture evaluation that needs to demonstrate how your entire life is impacted.
When it came to daily life, as a 20-year-old this really revolved around school. I spelled out how each year in high school I began missing more and more time, and eventually at the end of high school was forced to leave a job and miss a portion of my college orientation. I then explained being hospitalized due to a complication with a new medicine. In my final day-to-day portion, I described failing exams because of migraine and the process of getting proper accommodations and in turn transferring universities, having accommodations that allowed me to complete coursework from home and my eventual need to medically withdraw despite having a perfect GPA.
In describing the impact on my work I described my shift of working full time, to reducing hours, to reducing hours below even a part time basis and inevitably having to quit. I explained the accommodations the workplace was able to provide me and demonstrated how they were not sufficient.
Based on my initial research I included a paragraph describing how various aspects of the workplace could not be sufficiently accommodated including excess natural light in retail spaces, the need for communication and how it isn’t possible due to aphasia and constant nausea, and the need to be a reliable employee which is hindered by the unpredictable nature of migraine.
I concluded with the idea of my daily routine and described how simple household tasks and errands proved to be nearly impossible. A few examples I included were:
the inability to physically go grocery shopping
how cleaning a bathroom will drain me of my energy for the entire day
needing meals prepared in advance
needing comfortable clothes to minimize pain from allodynia
This was then closed out by describing how friends, family and a social life aren’t included in my routine, as managing migraine and attending doctors’ appointments are the only things I can manage. I also described how my birthday was spent getting insurance documents and postponing brunch – I don’t know how necessary this was, but it was my birthday weekend when I was completing the questionnaire and I was really upset that the only celebration was ensuring I could get to my doctor’s appointment the day after my birthday. And it really drove home the idea that my actual life didn’t matter, only seeking care did.
This final section of the headache questionnaire was a bit easier for me to fill out since I’ve had a blog and was able to pull exact examples from my life. I’d recommend taking some of your own time to fully analyze exactly how migraine has impacted your life or changed how you have to live.
The people evaluating your case aren’t looking for a sob story, but they are trying to get a really good picture of what your life is like because of your condition.
I specifically only applied due to one condition: chronic migraine, but many people also have other chronic illnesses or mental illnesses, and this headache questionnaire gives you the opportunity to provide a solid foundation for how these work together and may make things worse.
This section is something you’re going to want to be prepared for. If I hadn’t had my blogs to pull from, my response wouldn’t have been as strong and could have prevented me from being approved. You’re going to want to be as specific as you can, so having an idea of the impact on your life ahead of time is really important.
Step 4: The Phone Call
In November, just under two months after I’d submitted my application I received a phone call. I don’t know if this is standard procedure for people applying for Social Security Disability benefits or if they make phone calls on a case by case basis.
This call had a few follow-up questions.
The major one was regarding my progress on the new migraine drug. At the time this drug was very new to the market and the doctor on my case wanted to know if I’d seen any improvement since starting it. I had not and had stopped taking it due to extreme side effects that I explained in detail.
The final question was a bit more personal. They wanted to know if I ever got to make up the brunch I’d planned for my birthday. I had not. I still have not. I simply was, and am, too sick to sit in a restaurant and be surrounded by triggers.
The phone call was very brief, and I think the main purpose was to understand if the new medication was helping – had I found relief with it, I don’t believe I would have been approved for SSDI.
The Decision and Months to Follow
In December, I received a letter that they had determined I was disabled by medical terms. This was the first step that needed to be successful in order to receive Social Security Disability benefits. Over the next few weeks, they evaluated my financial eligibility to determine how much money I was qualified to receive.
The financial portion is based on a few things: how much money you’ve paid in to Social Security, your work credits, and other income. I say other income because you are allowed to work while receiving SSDI, and although you may be medically disabled, if you are able to engage in “Substantial Gainful Activity” you may receive a smaller amount of financial assistance or none at all.
Since I applied prior to being 22 and my parents both are of retirement age and have paid in, I was eligible for an additional amount based on my father’s retirement Social Security. My mom was also eligible for a portion since she had not been collecting her personal retirement benefits yet.
At the start of the new year, I received back pay. This is standard, and for people who have spent years going through the process, they are eligible to receive a sizable amount dating back to when Social Security determines your disability began. For me, they backdated my disability to July of 2017.
I didn’t receive my first disability check until the end of February – you get paid for each month the following month. In the months that followed my benefits were adjusted a few times as they continued to work out the quirks of what I was eligible to receive.
Other Notes to Know
The entire process can be long and messy. My disability review will happen this December. Due to the nature of my condition, I was only given a one-year review period. Typically the review period is every two to three years and for permanent conditions it is often every 10 years.
I’ve had to update my earnings report – I did that this week, not entirely aware of what it was for. From what I’ve gathered, this is standard procedure allowing those on SSDI to report any new earnings or change in work status or reconfirm previous earnings.
Everyone is going to tell you to get a lawyer. I’m going to tell you it’s up to you, and perhaps wait until needing to file an appeal before contacting a lawyer.
Disability benefits are not ample and are not enough to fully support yourself. You can get an estimate of benefits based on what you’ve paid in, but the average amount paid each month for SSDI is $1197 with a maximum of $2788. My personal payment is well below the average. For SSI recipients, the monthly payment is just under $800 for individuals, and about $1100 a month for couples.
For me, seeking SSDI was the best option to allow myself time to focus on my health, healing, and getting a better picture of what my life can look like with a condition like migraine.
I can’t tell you exactly why I got approved on my first go around. It could be my ability to articulate my experience. It could be the ungodly long list of treatments and doctors and my inevitable failure on the new migraine-specific drug. It could simply be the luck of the draw and a compassionate doctor who worked my case.
My advice to anyone is to consider it as a viable option. SSDI doesn’t have to be permanent as our situations can change.
There are additional things you will need to consider as well when applying, such as state or country specific regulations. Disability assistance programs are not unique to the United States, and the regulations vary across the nation and globe. You may find that you are unable to get married without losing benefits – and in some places with common-law marriages, you cannot live with your significant other and continue to receive benefits. You may find you are unable to live with roommates and receive benefits – I’ve seen this more with SSI, but it’s important to be aware of.
You may also be limited on the amount of money you can have in assets to be eligible to continue receiving financial benefits.
When you are ready to begin the process, make sure you’ve talked to your doctors and explained you will be going through the process of applying for Social Security Disability benefits. Make sure they are on board and if you believe your doctor doesn’t take you seriously, find a new doctor that is on board for getting you the best care possible. Being able to stop working and focus solely on your health is a form of care and treatment that has helped many people get on the right track and take control of their health. Your doctor should understand this.
Most importantly, I want you to know that you are not alone. Your experience is unique, just as your process applying and getting approval will be unique, but you are not alone in this.
There are limited resources and anecdotes out there, especially specific to your condition, and I hope in time that will change. I’m sharing my story because all I had was that document from Social Security with all its fancy technical terms. I had no one’s personal experience. Only a few people reached out to express that a family member had been through the process and was there if I needed anything.
So I will be that person for you.