The past year has been an extremely trying time for me. Despite accomplishing some great things and strengthening many friendships, I’ve been teetering on the edge of a complete breakdown, but trying to hide it. This past Friday is the day that I finally broke. This will be a long story, but I hope that you continue to read and it changes how you view the welfare/disability system and the people that have to rely on it.
I’ve previously written about how important working is to me. So much so that I’ve tried year after year to work full time in the hopes that I would no longer need to be on disability and I could live a “normal” life. After finally finding a successful treatment for my depression allowed me to work full time I found a job that I loved. I was happy to finally be living my dream of being independent and was taken off of long term disability.
Everything was going swimmingly until my health insurance decided I no longer needed my TMS (transcranial magnetic stimulation) treatments. This was despite all of the documentation from my psychiatrist stating that stopping them would be detrimental to my health. My doctor, my mother, and I were in a constant battle with United Healthcare (UHC) to authorize maintenance treatments all while I was just barely holding it together. Of course, I ended up being hospitalized. This is what finally got UHC to authorize my treatments again.
During this time I had to take a short-term disability leave from work. When I returned nothing was the same and I could tell that they were trying to covertly push me out. My position was changed, I had significantly less work given to me, I wasn’t receiving adequate training or help in my new position, and I was frequently left out of the loop. On top of that, I was given hell when trying to get an accommodation so that I could still get my treatments while working. Between all of this and physical and legal issues I was having from a car accident that past February I could no longer handle working full time and had to quit.
I left my job mid-October and made an appointment to get my disability reinstated. Of course, I had to wait until December for this appointment. So that was over a full month and a half of no income. Thankfully, I had done well with saving while I was working and my parents helped me out as well.
Now, this disability reinstatement was supposed to be expedited. During this time they will pay provisional benefits for up to 6 months while your claim is being reviewed. I was assured that it never takes the full 6 months and with the proper documentation it should be an easy review process. Well, that was a lie.
First, I requested all of the needed documentation from my psychiatrist, therapist, and different hospitals that I had recently been admitted to. This is where I knew this wasn’t going to be an easy process. In February I started receiving letters that they hadn’t received X,Y, and Z. I contacted my doctors and they confirmed that everything had been sent to social security within a week of my request. However, for some reason, the social security offices could not find any record of them. My doctors were kind enough to resend the information but I still received those letters that stated their information was missing. My mom eventually called and spoke with someone who confirmed that they did have everything in, but it was not put into the system and those letters were automatically sent out.
Now it was just a waiting game. Then in April, I received another letter that stated my provisional benefits were being cut off because I had reached the 6 month limit. This prompted us to call and see where my case was in the review process. Half the time we couldn’t get in contact with anyone that could tell us anything, then when we did reach someone with knowledge they stated the system had it listed as still under review. They couldn’t give a timetable as to when a decision would be made though. Just guestimates.
So at first I was stressed, but I didn’t feel hopeless because I work part time and have some income. Not enough to take care of me long term, but enough to carry me for another month or so combined with the money I had put away for rent and utilities. I figured a decision has to be made soon. But NOPE.
What eventually brought me to my breaking point is that I received a bill for almost $600 to cover my Medicare premium. While I was receiving my provisional benefits the Medicare premium was being taken from that. Well, now they aren’t getting anything so I have to pay out of pocket somehow. With what money, I don’t know.
My parents being the supportive parents they are, offered to pay this bill until my disability is reinstated if they could get the premium lowered, which they were previously able to do when I was working full time. I had opted out of my employer’s health insurance because keeping Medicare meant I could keep all of my old doctors and the copays were lower. So my mother called social security on my behalf as she has been doing for the past 12 years and this is where shit hit the fan.
One of the biggest issues I, and others have, besides the convoluted, bureaucratic red tape, are the people working in these social service offices. They have no customer service skills, patience, knowledge of the system, or empathy. My mother was spoken to like a dog, hung up on, and given the run around because most people there have no clue what they are doing. In any other customer focused industry these people would be fired for treating people in the manner they treated myself and my mother. But they thrive in social service offices. Why? Because people receiving benefits are not deemed worthy of respect and decency.
I had been out at doctors appointments most of the day so I wasn’t aware of what was going on until I stopped by my parents house to do laundry. My mom was looking worse for wear and asked me to try and call to make an appointment to go to the social security office. She gave me the number she was told to call and I since had recently started TMS again I was feeling strong enough to make the call. But I was more upset than I realized. I called, explained what was going on, and requested to make an appointment. I was then told that this was the wrong office and I would have to call Medicare. I lost it and broke down here. This was the number we were specifically told to call. But much like every other time we try to get something resolved with social security, we were given incorrect information and no one could give us an answer and passed us off to someone else who couldn’t give us an answer.
A culmination of months of fighting with social security, my health insurance, and my prescription assistance program, on top of seeing my mom at her wit’s end, caused all of the progress I had made to be lost in a matter of seconds. I felt hopeless and helpless and could see no other way out but to kill myself. This would solve all of these problems. For not just myself, but my family. I wouldn’t be this burden and they could move on with their own lives without having to worry about me.
This may seem like an extreme conclusion to come to, but if you’ve never had to deal with these entities as an emotionally fragile person you can’t fathom how desperate you become. You’re livelihood is at the mercy of people who see you as a case number and possible fraudster. You can’t reach out for help because of the stigma surrounding those using the welfare system.
What people fail to realize is that most people who are on disability would much rather be working full-time. No one wants the government scrutinizing every move you make and every cent you are gifted or earn. Being approved for benefits is no cakewalk. It’s a long, arduous, dehumanizing process. I didn’t even mention that I applied for foodstamps and was approved for $16/ month. $16 fucking dollars. It’s insulting.
The system is unimaginably broken and this is why I feel such a rage when I hear people going ranting about people who receive benefits. Benefits we’ve paid into mind you. Bringing up the welfare queen trope, saying people use foodstamps to buy drugs, saying women have more and more kids just to get money, etc. The ignorance surrounding those with disabilities and those living in poverty is why the system won’t ever be fixed. Too many people see us as undeserving of anything, even a basic living income.
I wrote this because it is the one issue regarding my mental health that I have not been fully transparent about because I had internalized the stigma surrounding it. But this last incident made me realize that I need to speak up about it. If not me, then who? If it remains a shameful secret, how will any changes be made? So I’ve decided that despite what others may think, I have to tell my story. Not just for myself, but for the people who do not have my platform.