Functional Neurological Disorder (FND) is a relatively common (though rarely properly diagnosed) condition. I was diagnosed in 2003 when it was still being called Conversion Disorder (and labeled as a mental illness rather than a neurological condition).
I want to be really clear about this: the condition you have (your diagnosis) is less impactful on your eligibility for disability support than how your condition impacts you and your ability to work.
You don’t even need to have a diagnosis to get disability—but what you do need is medical proof that you have a limiting condition that has lasted or will last for over a year, and which prevents you from doing any type of “significant” work.
In this case, by “significant” they mean in terms of earnings.
What is “disability”?
In the US, there are multiple forms of disability supports. Many salaried jobs have some form of disability insurance, which can help in the short or medium term, and some states have temporary disability supports as well.
SSDI is an entitlements program. If you have enough work credits and have worked recently enough, you are eligible to basically draw your Social Security retirement benefits early. This is the program that I’m on, and that many people who become disabled after working can get.
I feel really fortunate, as I went on disability just a couple of years after graduating from college—but I’d started working while in high school, and everything I did was on the books.
Between attending school full-time and working part-time during the school year, and working full-time in the summer, I had enough work credits accrued that I was eligible despite my young age.
Financial eligibility is your first hurdle, which for SSDI simply means that you can’t be earning “substantial” income – which is also referred to as Substantial Gainful Activity(SGA).
SSI is a social welfare benefit. It’s needs-based, meaning that you need to be poor enough for eligibility, and people on SSI get means-tested regularly. Means-testing is the process of looking over your income and assets to ensure that you don’t have “too much money” to remain eligible.
SSI is designed to help people who are born or become disabled early in life, as well as people who either don’t have enough of a work history to be eligible for SSDI or who had too much time elapse between when they last worked and when they applied for disability supports.
For example, my partner Al couldn’t apply for SSDI when he broke his acetabulum in 2017 because he hadn’t worked for five of the previous ten years, due to a combination of struggles after he lost work in the 2008 recession, and the traumatic brain injury he received in 2012, which kept him out of the workforce for an additional year or so.
We feel really fortunate that he has been able to return to work, but things were feeling pretty grim for a while after his break.
Being “disabled enough”
To get disability coverage, you need to be “too disabled” to do “substantial work” of any sort. That means that not only do you need to not be able to do whatever your career or goal was, but you also need to be unable to reliably do any sort of work.
With FND, this can be especially tricky, because while most conditions have “good days” and “bad days,” FND isn’t easily measurable, doesn’t show up on scans, and often can vary in intensity and in the symptom expression itself.
We know that our bodies can become unreliable, and it’s that unreliability that we need to prove in order to get on disability.
Also, disability coverage doesn’t have to be based upon one condition. It’s about the symptoms and how they prevent us from being reliably able to work.
For example, when I applied, I not only described my FND symptoms, but also recognized my personal history with depression and anxiety, explaining how these sometimes worsened my FND symptoms, and how my FND symptoms increased how often I experienced anxiety.
With sudden violent movements, full-body shaking, dropping things, and becoming unable to drive due to loss of control of my legs, I made a pretty convincing case that my FND symptoms kept me from being a reliable employee.
On the other hand, when my partner Al considered applying for SSI because he couldn’t work for about a year after he shattered his acetabulum, we realized that his doctors didn’t see him as too debilitated to work.
To be clear, we didn’t want him to need SSI, but we were thinking through what his options really were, given that he was in constant pain and had limited mobility (and increasing pain if he sat, stood, or walked for prolonged periods) due to the nature of the break.
We recognized that his constant headache (from the TBI) and the hip pain were not considered disabling enough, and Al used that as another piece of motivation for him to try to return to work.
I’m proud of him for pushing through and not giving up–he was able to find a new job and is getting close to full-time hours now.
If you believe that you can’t work, you need to prove it through your medical records.
Having your doctor certify that you cannot work
Find doctors you can work with and let them know that you intend to apply for disability.
Discuss their interpretations and understandings of how your FND expresses itself (or how the other conditions you have interact) and see if they agree that you are a good candidate for the disability program.
You want your doctor(s) to be on board with you on this, and letting them know can help them be sure to keep careful records of how debilitating your symptoms can be.
It’s very important to have the right doctors to do this certification—this usually translates into not only having your primary care physician on board, but also having the appropriate specialists agreeing on your diagnosis (what you have) and prognosis (what to expect in the future).
If you have other conditions as well, you also want records from those specialists.
Your goal is to have your medical records speak for themselves, proving that you cannot reliably work enough to support yourself.
Most people who are denied disability coverage are denied because they aren’t “disabled enough”—the judges or others who look at the applicant’s paperwork believe that the applicant could do some form of work to support themselves.
Often, this is because they don’t have good enough medical records—either the records and their statements don’t align or they don’t have information from the right specialists.
In order to get disability, you need to prove not only that you can’t do the work that you were doing, but also that you can’t do any other job either.
Proving that you can’t work
In my case, I showed that not only were my symptoms themselves limiting, but also that I’d repeatedly proven myself unable to hold a job, as I had been hired and let go by two employers in the six months prior to my disability claim.
In both cases, I lost the job directly because my symptoms made me unable to do the work they had hired me for—even though I had been capable of doing the work previously.
If you lose your job due to your FND symptoms, do your best to document that.
There are spaces to explain things. Medical records showing that you sought help for your condition combined with an explanation of what your job required and how your symptoms prevented you from doing it can be extremely helpful.
As an example, my symptoms were predominantly muscle movements—sudden, severe, and without warning. I was doing fieldwork with a state agency studying an endangered species of bird.
They were netting and tagging the birds, which I definitely wasn’t comfortable doing as I didn’t want to risk injuring one of the birds.
The next job I took involved working with some extremely strong chemicals.
We’re talking stuff that would soak through a typical rubber glove in about 30 seconds, and the Nitrile gloves we also had in about half an hour. It’s known to be absorbed through the skin and can cause serious damage to internal organs over time.
So we were working with it under the fume hood and double-gloved, appropriately cautious.
My movement symptoms are stress-responsive, so if I’m worried about something, I’m more likely to shake (or rock or whatever). I found that when we were doing that work, I could do it for a while (we were washing glassware with this stuff, then later setting up a filtration system), but then I could feel a buildup of “need to move” energy.
I’d tell the person I was working with that I needed a “twitch break,” carefully put what I was working on aside, take off my gloves, and back away from the hood we were working under.
Once I was far enough away, I’d “release” and my whole body would shake, rattle, and roll, these violent motions, often slamming into myself.
But I didn’t hurt myself (much) or anybody else (more important), and my lab partner and I weren’t unduly exposed to the chemicals. I’m sure it was disconcerting for him, though.
There were other tasks that I’d be asked to do that I recognized I couldn’t trust my body to do reliably—like adding only one or two drops of something to a sample, or other precise work. I was afraid that I’d shake at the wrong moment, and damage or destroy the sample or their work.
I eventually lost the job due, I believe, to the combination of my refusal to do things I suspected were risky with my symptoms, and how disquieting the movements themselves were for others—including the realistic fear/concern that one time I wouldn’t feel the symptoms coming on in time to take the safety measures I was taking.
The sudden movements, the urinary dysfunction, and the complete lack of control over when and how my symptoms came on was enough to get the people making the decision to recognize that there weren’t any jobs that I could safely do at that point.
If you’ve lost your job or significantly changed your responsibilities, be sure to explain that during your application so that it can be part of the decision-making process.
Think about how your symptoms made work difficult (and/or made your coworkers uncomfortable), and be prepared to detail what happened, how it impacted you (and/or your coworkers), and why you can’t prevent it from happening again.
Unfortunately, part of getting disability in the US at this time is proving that you can’t work due to your condition/symptoms. So when you apply, be prepared to prove that and recognize that that’s a necessity to get onto disability.
Discussing your prognosis/long-term expectations
FND isn’t always or necessarily a permanently disabling condition. It also isn’t a progressive condition. However, each person’s response to having FND is different, each person’s symptom set is different, and the why and how of getting better is especially hard to explain or quantify.
If you haven’t been able to work consistently for a year or more, it’s likely worth applying for disability support. I applied 8 months after my diagnosis (4 months after I lost my job), so about 13 months after my symptoms became noticeable.
For me, the last straw was an additional trauma. My father died suddenly four months after my diagnosis, and after that, I knew that I wasn’t capable of thinking about working for a while at least.
My father died shortly before Thanksgiving, and after the holidays, I started my application for disability.
I knew that if I was ever going to work again, it would have to be in a completely different field from what I’d trained in, so I would need time to sort myself out and then significantly rethink my life goals.
Applying for (and eventually getting) SSDI gave me that space and through the support of DVRS, I was eventually able to change careers and work (part-time) in my newly chosen field.
Applying for disability doesn’t mean that you’re giving up on working forever, but it does mean that you don’t anticipate being able to work for a few years.
After you apply, you still want to do whatever you can to help yourself manage your symptoms and improve your quality of life because one of the things they check on is your medical treatment—you want to be seen to be trying and working closely with your doctor(s).
A good percentage of people with FND can recover, but there’s always a percentage of us who have symptoms for the rest of our lives. For those of us with long-term symptoms, being on disability may be the absolute right decision—it was for me.
Be prepared to wait
Getting disability can take a long time. I had an incredibly short wait at the time, and now getting disability as quickly as I did is practically unheard of.
Now, most people wait over a year, and sometimes the wait is years. You do have the right to appeal a negative decision twice (the second appeal leads to a trial in court), but the waits between each part can be long.
Generally, if you hear quickly, the answer is no, but many of those nos can be appealed.
I honestly don’t know how I was able to get covered so quickly, but I am quite grateful for that.
Once you apply, you can’t work much (generally working isn’t a great idea while you’re in the application process), but you can work on yourself, work on your health, find good healing tools, and think about how you would work again if you can regain enough symptom control.
If you have supportive doctors, they can help you with your treatment plan and develop goals to help you improve your quality of life while you wait on disability.
I highly recommend not looking at the wait time as “lost time” but instead as a period where your job is to help yourself heal and adjust while you apply/wait for a decision on your disability claim.
My perspective is that if I couldn’t work a job, then my job is to heal myself.
I spent my waiting time learning relaxation techniques, searching for a useful antidepressant, using talk therapy to process the losses caused by my FND and my father’s death, and developing a daily routine to help me maintain a sense of purpose.
If you are going to apply for disability, use that time to help yourself heal.
Try to use your insurance to get the support you need—see if you can find an intensive FND treatment program, learn about Mindfulness-Based Stress Reduction (MBSR), find a good talk therapist, and experiment to find the other therapies that work for you.
Everybody with FND has a slightly different symptom set, and there are multiple potential triggers (most translate into some form of stress, but the type that’s most triggering for you may be unique).
We also are often extra sensitive to the placebo effect.
I’m most triggered by emotional stress—both positive and negative—but a friend of mine is often triggered by eating gluten and isn’t triggered as often by emotional stress.
If you don’t know what your triggers are, this is a great time to work on identifying them.
Basically, if you need to apply for disability, getting on the program is your job until it happens.
Your best chance of living your best life is to use that downtime constructively to help you deeply understand your FND so that you can manage it well and live a quality life.
As you regain control over your life, and have made the necessary adjustments, then you also may be able to think about if you want to work again, what gives you a sense of purpose in your life, and what next steps you may take once you’re covered, and if there are things you can do now to give yourself an edge then.
For example, if you want to go back to school, you likely shouldn’t do that until you’re on disability (and then you attend part-time), but you can research what schools you might want to apply to, take free online courses to build up your skills, or find small-scale volunteer opportunities (flexible and limited hours or short-term work) you may be able to do.
While I waited for disability, I let myself think a little about my next steps so that once I was covered, I knew what I wanted to shift toward, and knew about a course I could take at my local community college to get myself started.
There’s no specific timeline you need to operate on, but I do want you to recognize that you shouldn’t work during the wait and that not working is not giving up on yourself—it’s giving yourself time and space to heal.
If you feel that you need to apply for disability and want support through the process, I offer a coaching program to do that! The process is emotionally difficult, and I’m here to give you the best chance of getting coverage on your first try.