The Inhumane Disability System: Part 2
Recently, I wrote about some experiences that I’ve (as well as many people I have spoken with) had with the disability process. In particular, I discussed how the disability system can seem difficult at best, and downright cruel at its worst to those who have to deal with it.
Applying for disability with MS
The disability system is a big deal for many people with multiple sclerosis. Even if some haven’t had experience with it firsthand, there is always the concern that one day they might. So here’s a continuation of my thoughts about the disability system. Many of these are not only my own, but also echoed by various other victims of the inhumane disability process.
The stigma of disability
I’ve worked since before I was a full adult, paying taxes the whole time. In my post-college career, I was very fortunate to make some great money, of which a nice chunk went to taxes (especially with having no dependents). Some of it directly fund the disability payments I now receive. Despite having paid into the system that now supports me, there is a considerable stigma to it. I don’t mean from the everyday people I encounter (because that is an entire discussion on its own), I mean that the system itself feels like it stigmatizes me for being disabled.
The application process, the reviews, the long periods of time, everything is stacked against you. It assumes you are a liar and trying to game the system. Should there be checks and balances? Of course. However, my experience has been that the systems that are in place far exceed what should be needed. It is a system that treats the citizens that fund it, citizens who are at the lowest point of their life, like villains who cannot be trusted. All while they admit that less than one percent of disability claims are fraudulent.1
For many, it’s barely enough to survive
There is so little actual fraud with the disability program because even if you are approved, you aren’t exactly winning much. What I get each month is barely enough to survive. Because of past earnings and contributions, I receive about the most possible each month. That still leaves me barely above the federal poverty line (and many people actually get much less than me).2
Housing, food, the very basics...there is pretty much always a constant concern in the back of my head that I will be unable to afford those things - that I won’t be able to afford to continue eking out an existence. I’m a single person, struggling to live alone, so I cannot imagine having a family and trying to live with disability payments as a major source of income. As it stands, what I get from disability leaves me in a position where any major change in my life has the ability to leave me homeless, hungry, or more than likely, both. It’s like being stranded in the desert and at the end of each day, someone gives you the tiniest drop of water to allow you to stay alive and only stay alive.
Make or break
As I write this, I am under review by Social Security to determine if I can continue to receive benefits - at the same amount or at all. Whew, it’s been a rough few months. I have been sick to my stomach every day since I found out about the review. It would not surprise me if I end up having new disease activity because of the amount of stress it has caused me. The longer the review takes, the worse I feel. If my benefits are cut (which, again, doctors have not said that my condition has changed), I don't know what I would do. My life is already a massive struggle while relying on this system.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?