The Inhumane Disability System: Part 1
Last updated: August 2022
When you stop and think about all of the things that can make multiple sclerosis worse, stress is likely near the top of the list. As I write this, I am dealing with stress from a source that is all too common for those of us with this disease: the disability system in my country.
Seeking social security disability
I am currently awaiting the results of a regular review of my case, the results of which could have a massive impact on my life. Everything about the disability system is stressful and tends to feel like the process is stacked against those requiring it. In my experience, as well as that of many people I speak with, Social Security disability can feel downright inhumane.
A painful process
I’ve been very open about my disability story here. I was only 35 when my doctors determined I was no longer able to work consistently. It was not my choice and came after numerous MS relapses that slowly caused damage that I simply could not recover from. I was actually one of the lucky ones in that I was approved on my first application. Many people that I have spoken to were repeatedly rejected prior to getting accepted.
According to Social Security Administration's own statistics, 67% of people get denied after the initial application is reviewed.1 One would hope that a doctor saying that you are unable to work would be the critical component of acceptance, but that simply isn’t the case.
Managing your Social Security disability application
It seems to me that having the paperwork filled out correctly and using appropriate terminology is extremely important. I cannot recommend enough that you use a lawyer for this. Typically, a disability lawyer will take a small percentage from the back pay (a lump sum of the money you should have been receiving while in the application process) you receive upon approval. This makes a disability lawyer much more affordable than most people think.
Filling out the application is arduous, particularly if you suffer from cognitive issues. It also requires you to explain everything that is wrong with you and why it prevents you from working. While this is understandable, it’s still excruciating. It also lends itself to inaccuracy (I know I had a very hard time putting in writing that I was having difficulty. My pride really messed with me).
There may be in-person requirements
After you apply, you may have to appear before a judge, to again, explain what you tried to convey in the paperwork. At that point, that one person holds your life in their hands. I’ve not been through that part of the process myself, but I hear that it can be quite devastating, whether you win the case or not. Depending on how your hearing goes, you may have to re-apply and start the whole process over again.
It takes time
If the time comes, it’s important to apply for disability as soon as you can. The process is notoriously long (it took them six months for my initial decision). Since the majority of people don’t get accepted the first time, they then have to appeal, which takes many more months.
The whole time, you are sick and not working and somehow need to afford to live. I was lucky that I had a little money saved, but I had to move in with family and I completely exhausted all of my savings while awaiting a decision. These days, most folks have little to nothing saved and many have no family members who can help (I wouldn’t if it happened today). So waiting many months, even over a year, is enough to completely destroy a person financially. You’re struggling simply to eat, to have a place to stay, all while being incredibly sick.
Even if you finally get approved...
Even if you manage to afford to survive during that time, as you might imagine, it is incredibly stressful and takes a toll mentally and physically. Even if you survive the process, even if you recover and are able to work again, what will your life be like? Your credit score will have been trashed. You will likely be in debt. Your future will be bleak. The turnaround time of the disability process is enough to break people and completely destroy their lives.
There is much more to cover, so look out for part two on this subject.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
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