The Mighty Logo

When I Found Out Why My Disability Benefits Were Denied

The most helpful emails in health
Browse our free newsletters

I am a 42 year old woman of average/petite build, with long reddish hair and large gray eyes. I have fair skin and a sprinkle of freckles that give me a youthful appearance. Genetically, the women in my family have “aged well” and I have no wrinkles yet and no gray hair. These are genes I always thought I would be thankful for. That is, until I became disabled and had to begin the long, daunting process of 1) finding doctors to take me seriously enough to run tests/help me and, 2) file for disability and win. I not only look young, but I also don’t look sick. For a “normal” person, in a “normal” life, this would be literally the best thing ever. But when you’re trying to convince medical professionals, social security, employers, loved ones and even friends that you’re disabled, looking young and healthy are literally the worst possible things ever.

No one believes you. People say “but you don’t look sick” without a second thought. As if a neurological condition has a look or a uniform. Tell me — what does Chiari malformation look like? What does trigeminal neuralgia look like? Occipital neuralgia? Peripheral neuropathy? Craniocervical instability? Assuming you can even pronounce them, can you tell me what they look like and then tell me how I don’t “look” like these things?

I want to know how our society has come to a place where we’ve determined what disabled people look like. Is it because we associate disabilities with the universal wheelchair symbol used on bathroom doors and parking spaces? Is it because we associate “sick” with things like the flu and fevers and vomiting and hospital beds with beeping machines? How did we as a society get to a place where we can look at a person and decide in a matter of mere moments that they are well or not well? The terrifying reality is that even doctors are sometimes guilty of this. That is the truth that shook me to my core when this journey first began.

I thought the hardest part was over once I had finally found a team of good doctors that saw past my “healthy” exterior and realized how serious my conditions are. I thought the battle had been won. I couldn’t have been more wrong. After ongoing treatment, my neurologist encouraged me to apply for permanent disability because my conditions have no cure available, at least not yet. The onset of flares and symptoms are completely unpredictable and debilitating and come without warning. There isn’t an employer out there that will tolerate an employee missing two to three days a week of work (not counting additional tardiness).

I took his advice and I applied. As expected, I was denied the first time around, within about 60 days. This didn’t come as a shock, given my age (although I’m still not sure why age has anything to do with disabilities!) I was told to expect a denial pretty quickly, to not be discouraged and to just push the application through a second time. I proceeded to push it through a second time.

Six long months passed before I received a second denial letter. There was no explanation of why I was denied. Just a letter stating it had been determined that I am not disabled and my claim had been denied. It stated that my options at that point were to file an appeal and to hire an attorney and request a hearing before a judge. Knowing I couldn’t possibly return to work, I had no choice but to follow that course of action. My neurologist referred me to a local disability attorney, and so it began. I was told it would be approximately 22 months before I would see a judge. Nearly two more years without income and without insurance (Affordable Healthcare was not affordable.) No help from any state or federal sources. We were barely surviving on my fiance’s income in what was meant to be a two-income household. We cut corners and eliminated costs everywhere we could.

There was so much struggle financially and physically during this time. There still is. So much waiting. Finally, I received the letter stating I had a hearing date. Hallelujah! A few months early! I was nervous, excited, scared, sad etc. Every emotion possible. These hearings are the end all-be all. Yet another stranger getting to size me up in a matter of moments to decide if I am “sick enough.” Someone who doesn’t know my story, doesn’t see me struggle every day. Doesn’t see who I used to be or what I feel inside. This person only sees what I look like and what it says on paper. It’s a total crap-shoot. You don’t know who you’re going to get, what side of the bed they woke up on, if they had a fight with their spouse before work, or maybe they’re constipated today. Maybe you will remind them of an ex from college that cheated on them. It’s absolutely nerve wracking. Everything is riding on this short window of time with this total stranger who gets to decide if you get help or not. If you get medical treatment or not.

There are things about this hearing I expected:

I expected to feel my social anxiety.

I expected to be nervous.

I expected to feel a little defensive inside from years of having to “prove” myself.

I expected to feel a little defeated as a person that my life had come to this. There is something so final about it all being put on official documents. It stings a bit!

I expected to feel embarrassed and shy about discussing some of the more intimate aspects of how this affects my daily life.

But there are some very huge things I did not expect and no one could have prepared me for:

I did not expect to find out the reason I had been denied on my second application. I was also not expecting for that reason to be so absolutely trivial and ridiculous that I truly didn’t know if I should scream or laugh or cry right there in the courtroom. I ended up doing a combination of many things.

The key factor in me applying for disability and leaving my job was my inability to be reliable. I was struggling with daily pain, flares, light sensitivity, panic attacks (which were made worse by the physical symptoms I couldn’t control), etc. As time went on, I eventually had to give up everything I loved. Simple things we enjoy, things that make us feel good. Little things and big things. I couldn’t go out to eat with friends. I couldn’t have a dinner date with my fiance. I could no longer go out for a movie, which has always been my favorite thing. I could no longer go for a pedicure. I had to limit a visit to the salon to once every 6-8 months (although now it’s even less frequent) because of pain. I can’t tolerate something as simple as laying on the deck to soak up some sun. I can’t go for a walk alone because of the vertigo. I couldn’t do the grocery shopping. The only time I left the house was for a medical appointment, and even then someone would have to drive me. The list is endless.

I had one thing I held onto for as long as possible. One. The tanning bed. I went about twice a month for 9 minutes. It is .4 miles from our house and I would be back home within 25 minutes. Eventually, I was only going once a month because even that was making me sick, so I had to give that up, too. It was the only thing I left the house for but when it was only once a month, that $19 was being wasted so I canceled it. At that point, I was never leaving my house unless it was to see the doctor.

Imagine my shock when the judge informed me that my claim the previous year had been denied because Social Security had me followed and photographed walking into a tanning salon. Not numerous times. one time, for 9 minutes. I went there and straight home. This means they were watching my house for an extended period of time waiting to “catch” me going somewhere because I never went anywhere else. Somehow, they decided if I could tan for 9 minutes that one time then surely I could work for 8 hours a day. That’s logical, right?

I cannot put into words how humiliating it is to sit in a courtroom and have to explain to a judge why I was at a tanning bed if I am sick. I would like to note that this particular judge seemed just as irritated by this as I was. He was compassionate and kind, and only brought it up because it had to be on the record. However, this fact did not make it any less humiliating or violating to know I had been watched while I walked to my mailbox in my pajamas, bra-less, countless times. How many days did they see me actually “look” sick before they saw me go to that tanning bed? I guarantee you, many.

I cannot put into words how humiliating it is to sit in a courtroom, as a woman, and be asked about my body grooming habits and if they’ve been affected by my illness. If I’m able to shave. If my level of intimacy with my partner has been affected. To be told, beforehand, by my attorney staff to “not wear concealer,” to not cover my flaws, because the judge “needs to see your fatigue.” I understand this on one level. But on another level, in today’s society, we are surrounded by ads and commercials that teach us from a very young age to look our best always (I could go on and on here, but we all know I don’t need to). So to be told to not cover the dark, tired circles I would normally hide felt strange to me.

I have a prescribed neck brace I have to wear three times a day for one hour at a time. I don’t like people to see me in it. I feel funny about it. I had to wear it in court. For no other reason other than to allow the judge to physically see a part of my day. If it’s in your medical file, you’re supposed to have it, such as a cane or walker, etc. However, this felt very violating and uncomfortable to me. What if you were insulin dependent and were ordered to prove it by giving yourself an injection in front of the judge? Or you have a colostomy bag and ordered to prove it by showing it to the judge? Why is it not enough that it’s in your medical file? Why did I have to show it? I didn’t have to show the judge my medications. He had them on file. I wasn’t forced to swallow my pills in front of him.

I felt naked. Exposed. As if they were performing surgery without anesthesia. Talking about me as if I weren’t sitting right there.

I write this, not as a “poor me, everyone feel sorry for me” article. I want to inform people of what goes on behind the scenes. To prepare you. To let you know that if you are in the middle of this daunting and long process, everything is on the line and that you could potentially lose all of it over 9 minutes of wanting to feel human. Nine minutes of doing something totally sedentary robbed me of receiving medical care for the past 18 months (that’s how long it’s been since the second denial). Nine minutes of wanting to feel that warmth on my skin has led to our financial struggle for this past 18 months. This is wrong. It’s more than wrong. It’s criminal. It’s abusive. It’s sick. I truly do not know how that person has slept or can live with themselves.

This system is broken.

I know of individuals on disability who are always on the go, always socializing, always out at bars, living very active lives. This doesn’t mean they don’t have some type of disability. But it does make me question how someone like myself can be denied for laying down in a bed for 9 minutes less than a half mile from my home once or twice a month… and then once per month… and then not at all. They can deny me and determine I am able to work while others out there are partying multiple days a week, taking trips, going to various events, etc, and deemed unable to work.

This system is broken.

I’m sure you’re wondering how my hearing turned out. I can tell you that I don’t have an official document with the judge’s ruling yet. It’s only been a few days and I’m clearly still processing all that has taken place. However, the vocational expert representing the state said, on the record, that I would be “unemployable” with my limitations and with the conditions mentioned in my file and at the hearing. At that point, the judge stated “Well then, I think we’re done here.” The judge then assured me that I would have his decision as soon as humanly possible. He spent an abnormal amount of time discussing my case with me — almost two hours. Most of these hearings last around 20 minutes. As I mentioned above, he was kind, compassionate, curious, thorough, and frankly riveted by my case. It was comforting and rare to be truly heard like that.

I just wish his compassion soothed the sting of the total humiliation of this entire process… the violation of being basically stalked and photographed by the state and then persecuted and punished for doing something so absolutely innocent. And also the sting of officially hearing an expert say out loud “no employer would want her.” Ouch. For someone like me, who has always valued hard work and earning that paycheck, that really made all of this really sink in. Of all the treatments and medications and poking and prodding and sideways glances I’ve had to deal with over the years, that is by far the toughest pill to swallow.

We want to hear your story. Become a Mighty contributor here.

Getty image by Bee Bright.

Originally published: January 8, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home