At this point, more than one curious person has asked me about my attempt in applying for SSDI (Social Security Disability Insurance) and to be totally honest, it is something I have been trying to write about for a few months now.
I received my denial letter a couple months ago (I submit my application in December 2012) and after all the time that has passed I was overjoyed to receive this denial letter.
The reason I was overjoyed to be denied was because my path through the application process was neither easy or uplifting, to say the least!
My first hurdle was working with a team of lawyers who told me appear and act a certain way. They strongly suggested I give up this blog completely, which I was very uncomfortable with. On one hand, I wanted to win, but I truly believe (as do my family, friends, and doctors) that anyone who understands my symptoms and has seen me interact with others would not doubt my claim that I am unable to hold a full time job. It was important to me through this whole process to hold onto that and to be ok if things didn’t work out (because I had been honest the whole time), but it was very difficult to feel manipulation and pressure by my lawyers who were advising me to do things that would undermine many of the things that keep me afloat enough to survive (blogging, therapy, spending time with other people, etc).
The second hurdle was the judge I was assigned for my hearing back in February 2014. Apparently different judges who are making the decision regarding SSDI claims have different political affiliations, different beliefs about the way SSDI should be structured, and different viewpoints on the topic of mental illness (among other things). I was told my judge was the toughest in the county and to expect that I had a chance of about zero. While I expected that walking in, what I didn’t expect was the way the judge treated me in the hearing.
On one hand I could understand that it was the last hearing of the week on a Friday afternoon, and that maybe he’d had a bad cup of coffee earlier or was anxious to get home… but I was not prepared to be verbally abused in the courtroom. For the next couple months I became psychotic, trapped in my mind where this judge was constantly attacking me. I was so distraught that I consented to try Seroquel again.
The third hurdle was a full investigation of me, as prompted by the judge and federal government. The investigation happened when I was (naturally) experiencing a hypomanic period, seemingly corroborating the theory that the judge had that I was attempting to commit SSDI fraud. Detectives posed as Seattle Police officers to gain entry to my apartment where my fear of the SPD kept me from mentioning anything regarding my own mental health -again seemingly corroborating the theory that I was faking it.
When I received a copy of their report in the mail (along with notations of voice recordings, notes from being tailed for a week, and copies of blog entries I had made that were taken out of context) I began to nosedive into a second psychotic tailspin. The men who were agents for the government had spoken to my landlord, neighbors, even people in a weaving group I had no longer been part of for over a year -all about my mental health. The paranoia became overwhelming, and I could no longer feel comfortable in my apartment knowing that space had been violated… so we moved.
It might not seem like such a surprise now that I was hospitalized around Halloween last year. I could hardly even talk to my grandmother on the telephone for fear that they were listening to me, let alone send emails or write in this blog. My lawyers told me not to talk about it, so I relied heavily on Corey (my boyfriend), my therapist, and my psychiatrist. I provided my healthcare team with copies of the paperwork I had been sent about what happened and they were both horrified and flabbergasted, but ultimately they had proof that I was telling the truth and could corroborate that the situation had triggered the symptoms I was having.
The final hurdle was a second hearing, scheduled to address the findings of the undercover investigation against me. Initially the hearing was scheduled to take place the same week as my birthday in November 2014 but was cancelled by the judge and rescheduled for April 2015 (the same week as Corey & my anniversary… lame!).
For many months it had been clear I wasn’t going to win, I just wanted the inquiries and fear to end. Honestly I expected the judge to berate me further in the hearing, but to my astonishment he was much more polite (my lawyer said that was likely because of the documentation of his actions directly leading to my most recent hospitalization in my file). After the back and forth with my lawyer he simply looked at me and said my file was inconclusive because of how inconsistent everything was, from the notes from my healthcare team, to my work history, to the report from the detectives, etc.
This was the one small window I was waiting for. For the first time I was able to do what I do best; relate my symptoms and experience with someone else in a way they can understand. I told the judge that inconsistency is the very nature of my disability… that I can be simultaneously the best and worst employee you’ve ever had, and that it feels impossible to remain consistent when I might have strong feelings of joy one minute and intense feelings of despair or fear the next. Most of my employers have considered having an unreliable employee worse than a mediocre one, so that inconsistency has been a huge hurdle in trying to remain employed.
He looked admittedly thoughtful and said he would reconsider the evidence. This, if nothing else, helped me shake off the fear and paranoia that had accumulated the past couple years. It was the first opportunity I had to defend myself and my life and my reason for applying, and even if I was denied benefits at that point I was simply happy to be rid of the specter that had been haunting me.
Several months later I received my denial. I am happy because it means I am free. I am no longer worried that the government is watching me (though who knows), and though I might not be able to take care of myself financially, I do have, however briefly, (heh) my sanity.
Typically I pride myself on being open about my life and my emotions, and I genuinely went into this SSDI application situation with the intention of writing about it every step of the way. The whole experience was much different than I expected, despite knowing I would be at a disadvantage because of my age and my disability being a mental disability as opposed to a physical one.
While not having benefits means I am in a difficult spot financially, I have proven the last five years that there are many organizations willing to help support those with mental illness who do not make the applicants sing and dance, or trigger extreme worsening of their symptoms before they are willing to help. While the point of this post isn’t to shake my fist at the government or attempt to bring shame on those involved, I can’t help but question this system after I have experienced it firsthand.
Of course, this comes with my usual reminder that this was a situation that happened to me. While I have heard many accounts of people in my local support groups achieving SSDI benefits, I haven’t heard many stories like mine… and though I don’t know if they’re out there, I wouldn’t be surprised if people aren’t completely terrified to share them (I sure was!). This is not the inevitable end of every SSDI application, just one, and to me it seems like one worth pondering.
Ultimately, being under the scrutiny of the federal government was one of the least fun adventures I’ve ever had in my life…
I’ve never been so happy to be denied something before!
I do not intend to reapply any time in the immediate future because, well, I can’t without some kind of proof of my symptoms worsening, for one. Even if I could reapply immediately I don’t think I would, based on how emotionally and mentally overwhelming the whole experience was. I really need some room to breathe in the mental health department, and I have always had the outlook that I do much better when I am poor and slightly more content than when I opt to trade financial stability for increased emotional instability.
The last two years involved the longest periods of psychosis I have ever experienced, so thank you to my friends and family and anyone who was even the least bit supportive in that period (well, and ever). Sometimes it has felt easy for me to believe in the power of the judicial system and “justice” in America, but realistically it is the sense of community in the people that rally around me that have done the most to help keep me going.
So, no SSDI? Ok. I still consider myself to be one very lucky girl!