by Deborah Marcus (Blog: Visions of Song)
In the last blog post on this chronic pain thread, there was mention of the stigma that surrounds mental illness even today. Another layer of stigma, making the recovery from mental health issues, chronic pain, and multiple invisible disabilities surrounds the matter of applying for and receiving (if you’re lucky) disability benefits from Social Security.
As the days roll along, and I try to maintain some hope for improvement, better management of the severe and chronic facial pain that results from trigeminal neuralgia, I also take steps to pursue Social Security disability monies. For those who are unaware, SSDI monies, when awarded to an individual based on meeting medical and technical qualifications of disability, is from monies that have been paid into the fund by the individual from their past employment. https://www.ssa.gov/disability/. SSI monies are also based on disability but can be awarded to individuals who meet the (exceptionally low) income guidelines along with meeting the criteria for disability.
When I decided that I had to pursue SSDI, because I am unable to work, I felt a deep sense of shame. After all, I am not yet at retirement age in my mid-50s, yet I am unable to work and need help supporting myself. It seemed as those there were these voices surrounding me, echoing messages I’d internalized over the years about people who don’t work and get disability payments. Loser. Lazy. Certainly you can find a way to keep going, to keep working! Why are you giving up?
The fact is, I should have “given up” a good year before I did, and while I don’t really regret pushing on, I know I exhausted myself physical, mentally and even spiritually more than I needed to, all in the name of “I’m no quitter”. I had to get to the point where I felt crushed, suffocated, to say that I need to stop, that I don’t know how I’m going to survive if I don’t get approved for benefits, and even if I do, how I’ll make it work until the determination is made one way or another, but I have to stop. There was a measure of relief in completing caving in to this decision, feeling like I failed, but knowing in my heart that I couldn’t keep going like I was, getting by at work by the skin of my teeth, only because I was in positions of lesser responsibility the past two years than I had been most of my professional life, and because of that, had skills that let me “eek by” and get the basics done and fly under the professional radar. I would crawl home each day, in excruciating pain, close the door to my little apartment, get in my pajamas and thank God for the internet so that I could have some human interaction even as I had less than nothing left to give to people in my life, to myself, and would hope I recovered enough by morning, by Mondays, to continue all over again. After beating myself up for a while, it dawned on me that it wasn’t an act of weakness to reach for help, but rather an act of strength, to say that I need help, I can’t do it alone, that I’m not well and need to figure out how to get better and recharge—I’ve never really let myself say that, even as I’ve struggled so many times in life. I confess that I still think it’s a point of strength that I was determined (stubborn) about keeping on, making life work as a working person in spite of everything. I also think it’s a point of strength now, to say I need to pause, to breathe, and let others hear how I am and what I need. In the process, I’ve discovered some other things. I have learned that I have people who really love me and want to help me. Some help me by listening, some by talking things out, some by prayer and positive energy, some make sure I won’t be homeless, or without car insurance, or batteries for my cochlear implant speech processors, or food. I have already discovered a couple of people who have been in my life, good people, but who for whatever reason cannot meet me where I am right now. At first I was really hurt by this fact, but I’ve truly come to see that it’s all a process. It’s true that each person is in one’s life for a time, sometimes short, sometimes longer, and really, I have been on the other side of this equation over the years, so I see that it’s just Life.
As for the process for applying for disability, I have completed all the paperwork, medical records sent, independent medical exams requested for conditions they wanted more information on from outside evaluators. Now I await their determination. Meanwhile, I grab every good minute, every good hour, and remember to stay engaged, monitor my mental health status, take short wanders and photograph the beauty in nature. I’m working as hard at this process as I have ever worked in any professional capacity in my entire life. I figure I owe myself this much. When I start to forget, I have some loving people in my life who whip me into shape.