Slipping Through the Cracks as Someone Disabled by Mental Illness
I have been in and out of therapy since I was 6 years old, and my diagnoses often changed depending on who I saw and what their area of focus was. At this time I am diagnosed with major depressive disorder (my first diagnosis), ADD/ADHD, PTSD, and finally borderline personality disorder and paranoid personality disorder. At one point I was also diagnosed with bipolar type II and schizoaffective disorder, though those have since been ruled out and replaced with borderline and paranoid personality disorders.
To most of the world I appeared to be someone who was well educated, who had for the most part been able to function within society for the majority of my adult life, and who could put on the appearance of being in control of what was going on around them.
Unfortunately all of that was a mask that was quickly crumbling away.
I often likened it to holding a glass ball in my hands, and that ball was filled with sand. There were tiny little cracks in the ball, but so long as I kept tight control and didn’t let anything shift, only a grain or two would fall out each year. The amount of control I was having to exert was a double-edged sword that left me needing to exert more and more control each year while also making the cracks grow bigger, leading to more grains falling out. The harder I tried to keep control and keep the sand inside, the worse I made things.
In 2013 the ball finally shattered, leaving me unable to function without help from my husband and family. I was in crisis and yet it felt as if I couldn’t get the help I needed no matter where I turned. At one point my intrusive thoughts became so overpowering I committed myself to the psychiatric ward of the local hospital. Unfortunately that only made things worse (as did the doctors not listening to me about my medications) and I had my husband check me out the next day.
I applied for Social Security Disability in 2013, two years after I’d lost my last job due to mental health issues and after I’d had multiple episodes during my attempts to go to college. At 30 years old I knew I had an uphill fight trying to prove I couldn’t work, even though I had held over 15 jobs in under 10 years, most of which I left due to mental health reasons or was fired due to mental health issues making me unable to continue the job. In one case I was fired due to a fellow employee intentionally triggering my PTSD and me responding by physically hitting them to get them away from me.
After filling out the questionnaire with the help of my husband, I received my first denial. I filed my first appeal and received the notification that I needed to be evaluated by a psychiatrist as well as have a physical done. I assumed when I received this notification that all of the medical records, including my psychiatric records, would be sent to the medical professionals and they would review them before the meeting. That was a mistake.
When I met with the psychiatrist he asked me the usual questions: remember the words pen, apple, and cup, draw a square on a piece of paper, count backwards by sevens from 100, questions I was more than familiar with due to my years of receiving psychiatric care. He then asked me to tell him about my medical history. I gave him as much detail as I could, highly irritated that I was having to cover information that was in my file, and by the time I was done with that he notified me that my time was up, as we only had an hour.
I was flabbergasted that this person would only spend an hour with me, and that was apparently enough for him to make a decision on my mental health and stability. He told me that I most likely had bipolar disorder type II, even though I constantly denied symptoms of mania outside of hyper anger or hyper emotion, even though I told him my diagnoses were listed in my chart and bipolar had been ruled out. I felt like he’d made up his mind and I wasn’t being listened to. We hadn’t even covered half of what I was going through, nor had we even covered any history past my 24th birthday. Most of my diagnoses were made after that point, and yet since the hour was up he was done.
It was then that I learned just how easy it was to slip through the cracks when it came to applying for disability. If you didn’t have some sort of blatant disability that could be seen for miles around, you would have to fight tooth and nail just to be heard. Even though I literally could not function for more than a few hours a day at best, even though I could not handle being around other people, even though there was no way I could hold down steady employment, this one hour meeting with a person I’d never met before landed me with my second denial.
I filed my second appeal, meaning this time my case would go before a judge, and found a lawyer to help me. I will forever be thankful for the work that my lawyer and his wife did, even though the judge decided I wasn’t disabled. I will discuss that more later.
Due to another psychotic episode, my lawyer filed to have me re-evaluated and I found myself once again sitting in front of the man who had decided my fate. This time I was a lot more forceful, knowing I was on a time limit. I told him I already knew the words he wanted me to remember due to being asked them so many times, so he needed to come up with others. I informed him that he had not gotten the entirety of my medical history due to how expansive it was. I told him he’d given me a diagnosis that had been ruled out multiple times in favor of borderline. Only then did I feel he was listening to me as I told him about my symptoms and what I dealt with on a day-to-day basis.
I told him about the hallucinations, both auditory and visual. I told him about the intrusive thoughts that told me to harm myself or others, leading me to internalize those feelings and harm myself. I told him about the nightmares that left me often without sleep for days on end. I told him about my PTSD and my fears of being around other people to the point I would become hostile to keep them away. I placed all of my cards on the table, refusing to stop until he had heard everything I needed to tell him.
I walked out of that meeting with a new diagnosis, paranoid personality disorder comorbid with borderline personality disorder. He stated to me that people with comorbid (simultaneous) personality disorders often had trouble holding down a job except in very specific situations, and even then it often wasn’t for very long. He wished me the best, and agreed with me that one hour is nowhere near enough time to get a good feel for a person and their mental state or abilities. Unfortunately due to “budget cuts” and “streamlining” the process an hour was all I would be given, as opposed to the several hours one used to get.
The day of my hearing came and I sat before a television screen doing my best to not squirm and to stay focused. I struggled to keep my legs still so I wouldn’t shake the microphones. I tried to answer the questions the judge asked me, but the entire time I felt she had made up her mind before we’d even sat down. She spoke with the social worker, providing restrictions that had been listed by the psychiatrist, asking if he could find any jobs I could do.
The restrictions were little to no interaction with coworkers (none if possible), ability to take breaks as needed, ability to work at own pace, and a few others that essentially boiled down to me being left alone to work during my shift.
Both my lawyer and I noticed she left out two restrictions, specifically no interaction with supervisors or superiors, and at the same time the need for constant supervision to remain on task. Without those two restrictions the social worker found two jobs, a bus washer and industrial laundry. I’d worked industrial laundry before and knew it required constant interaction and communication with coworkers, but was afraid to speak up and couldn’t find a time to get in a word.
My lawyer asked the social worker to include the two restrictions the judge had left out, and the social worker stated there were no jobs I could work with those restrictions. While it could have just been my perception, I felt as if the judge was annoyed by this. The letters from friends, family, and former coworkers were also ignored, with her instead favoring portions of the psychiatrist’s evaluation.
I still had hope that I would receive a favorable ruling. It was 2016 and I had been fighting my case for three years.
I received the ruling in January of 2017. The judge essentially decided that I was too disabled to work, but not disabled enough to get help. She cited the two jobs the social worker had listed as jobs I could work, showing me she had in fact made up her mind before sitting down with us, and that she was ignoring the evaluation as well as the restrictions by a medical professional. She’d ignored all of the letters, the documentation from my doctors, all of it. Because I could fix basic meals and I could clothe and bathe myself, I wasn’t disabled in her eyes.
I was given the option to appeal or start over again. The problem with starting over was that the judge and the people who processed Social Security claims had run out the clock on my insurance, meaning if I reapplied I would not receive any of the back pay I was owed. My only choice was then to appeal, and then like all the other times, sit and wait. I wouldn’t hear a thing until I either received a notice that I was being given a new hearing, they were overturning the decision, or they were agreeing.
Since I filed my appeal I have attempted to find work, but either my mental health issues have stopped me, or they have seen my extensive job history and my three firings and politely turned me down. Even in jobs where they stated no experience was necessary, I have been turned down for some unnamed reason.
Because I fell through the cracks in the system, I am left relying on others to stay alive. Because of the cuts to how the decision is made (cutting down the amount of time a mental health provider sees someone), I was unable to give an accurate telling of what I dealt with, and even after a second visit knew that there was more that needed to be covered. Because I didn’t appear disabled “enough” to the judge, I was tossed aside.
I have been out of work since 2011. I have had to rely on my husband and on student loans I will most likely never be able to repay to survive.
All because I slipped through the cracks.
Getty image by Steve Collender.