I’m struggling. There are multiple things going on that are making me upset. I feel as if I crave love, support, understanding, validation. I don’t feel like I am getting what I need. This feels like a unsolveable problem. My pain lately has become extreme. My brain isn’t engaged.
When I first became ill, after my second surgery, I was unable to return to my job. In order to have money to support myself and my son, I had to file a claim with the long-term disability insurance that I paid for while I was working. I was very uncomfortable with the word “disability”. In my mind, being disabled meant you were completely bedridden, paralyzed or preparing for death. To me being disabled meant you were over, finished, that you would never be able to work again.
If you had known me before I got ill, I was the opposite of what I considered to be disabled. I was raised by parents who instilled a strong work ethic. Work came before all else. Both of my parents lived during the depression and grew up in working class families. My mom’s mother was a waitress and her father was a cook. My dad’s father worked for the railroad and his mom raised a dozen children. I never had the idea that life owed me anything. I never expected to marry someone who would support me. I learned early that the best way to survive was to be as independent as possible.
I left home before I turned 18. My first jobs were in the fast food industry. The highest level of education anyone had ever achieved in my family was an associate degree. In my family, college was seen as a luxury for those who could afford to meander their way through life. My father did not approve of my desire for education and died shortly before I earned my Master’s Degree.
I loved working. I paid for all of the education I received by myself. If there was anything I felt proud of, it was my independence. So when I lost that, I lost everything.
I figured out that if I wanted to access my insurance, I was going to have to use the word disability and convince the insurance company that I was disabled. In order to do this I had to start thinking differently about myself and the illness. I already felt guilty for not working. No matter how sick I was I still felt like I wasn’t disabled enough. One of my former colleagues accused me of “slumming”. I never forgot that.
By then my chart at the Neurologist’s office was about four inches thick. My Neurologist submitted the requested records. Several months later the disability company informed me that I had met their qualifications. When I spoke with their representative she informed me that I would be receiving back pay. She seemed surprised by the amount and said something like “It’s not often I get to give good news like this”. She informed me that I was required to file for Social Security Disability in order to continue to receive benefits. That’s where the problems really began.
Maybe it was just bad luck but my representative for Social Security Disability was one of the most rude and condescending people I’ve ever dealt with. She would insult me on the phone, and chastise me for not having a pen and paper ready when she called. From the beginning she treated me like someone who was trying to work the system. I felt I had no recourse. I was trying to survive. In order to survive, you need to have some money. My disability company was paying me, but would stop if I didn’t pursue this thing. So I complied with all of the woman’s requests for information. My doctor went above and beyond in providing records. At one of my visits my doctor had a conversation with the social security rep that turned into a verbal confrontation. Combined with the sickness and the lack of clarity in my brain, everything just seemed to be crashing into a puddle of insanity where other people were making decisions for my life. My job had become to comply with multiple agencies demands by certain deadlines, Most of the time I was terrified.
I started worrying that someone would follow me and see me doing something like grocery shopping or carrying something upstairs and use it as evidence against me. I had just had my thyroid gland removed and the nightmare of unstable thyroid levels had begun. I was having intense periods of depression and anxiety alternating with paranoia. My brain, once being the one thing I could rely on, was failing me. I became terrified of answering the phone.
My first attempt at Social Security disability was denied. My doctor was trying to send them more records and the rep made the decision without receiving them. I appealed and was denied again. Everytime I received their denials it felt like a huge invalidation. Maybe I was slumming. Who was I anymore? I felt defeated. The second denial letter was thrown into a pile of things to attend to when I felt like I could think better. Then I forgot about it, like everything else. At that point the only thing I could attend to was day-to-day survival. I couldn’t think anywhere beyond that.
Eventually I got a letter from my disability company threatening to cut me off unless I reapplied to Social Security. They said, “Look, we have this attorney who will handle your case from start to finish and you won’t have to do a thing.” So I said OK (what choice did I have?) I didn’t have the wherewithal to go out and find myself an attorney. At that point I was rarely leaving the house. I was in bed most of the time. My ability to make choices grew smaller each day. I had lost the ability to steer my life in any direction. There were always more medications and possible diagnoses thrown around. I was having multiple MRI’s in an attempt to discover what was causing me to be in so much physical agony.
I re-applied for social security and signed papers to retain the disability company’s recommended attorney. I told them when I signed with them that it would be important to attach my new application to my prior one so that I would receive the proper amount of back pay. I never spoke to an attorney. I only spoke to the women who were in charge of the paperwork. They informed me that attaching my new filing to the prior one was impossible. They implied that I didn’t know what I was talking about so I let it go. They informed me that if I were approved for disability my son would also receive monthly benefits due to my disability (he was 13 at the time). What I wanted at that point was someone to handle this mess. I could not bear the thought of being humiliated again by a social security representative. Every challenge that presented itself felt like someone was yelling at me, telling me I was worthless. I signed with their attorney because I wanted there to be less pressure on me. I wanted the disability company off my back.
Because I had already re-applied through Social Security, the attorney’s minions didn’t have to do anything to handle my case. I received my first denial letter as expected. I think they may have filed the papers to appeal, I can’t remember now. I received a call from Social Security asking for more records. I gave them to them. They sent me a letter demanding that I attend a psychological exam with a provider of their choice. This felt like another violation to me but again, what choice did I have?
I attended the appointment with their psychologist. I was angry that I had to go and was committed to revealing nothing. As a survivor of sexual trauma, it felt like having an involuntary pelvic exam. The psychologist put me through a battery of tests and asked me about my childhood. I revealed nothing. Several months later I was informed that I had been awarded social security and received back pay. Soon after I received a phone call from the attorney’s office telling me that most of the back pay would go back to the disability company. I knew this was going to happen, it just seemed like another thing that was unfair but that I had no choice in.
After that the attorney’s office started calling me repeatedly telling me I should apply for benefits for my son. They were insistent, and since I thought it could benefit me I finally scheduled the interview with social security. After the conversation I received a letter telling me that my son had been awarded benefits and that I would receive back pay. The social security office was very clear that the benefits were to be used for the care and feeding of my son and nothing else. After barely being able to survive for the last several years I was looking forward to being able to provide for my son.
A few days after receiving the back pay the attorney’s office called and informed me that the entire amount of back pay would be going back to the disability company, and that my monthly benefit would be reduced by the amount that social security had awarded me. I wasn’t expecting that so I was really pissed. Then the attorney’s office started calling daily using manipulative tactics to get me to call them back. They told me they had important information about my taxes that I NEEDED to know. They questioned my sincerity. They said things like, “As your attorney’s office we must hear from you”. They used all the same tactics that collector’s use to demean me.
This “attorney’s” office did nothing to help my case. My case was decided on the information contained in my medical records. It became obvious to me that their office was really a collection agency for the disability company. Their job was to do the least possible work to get the benefits and then funnel them back to the disability company, most likely for a cutback. The worst part is that they did all of this while masquerading as my advocate.
I sent them an email asking them to stop their harassing and deceptive phone calls. They responded by saying they were just trying to help me. I took all of the money out of my bank account and put it into cashiers checks which now sit on my desk. I presume that the disability company will come after me now and tell me that unless they get their money they will stop paying the monthly amount. I suspect they will threaten me with legal action. And again I am left wondering, “What choice do I have?”