As someone who happily puts himself out there when it comes to my disease, I tend to get a lot of inquiries about specific MS-related events in my life. One of the more common ones I get asked about is how I ended up on disability. How did I know when to apply, did I use a lawyer, etc? So I thought I’d take some time and discuss my disability story. Going on disability is a reality that many who battle Multiple Sclerosis face. Even knowing that, I still never expected it to happen. So this is my disability story. It’s not a how to on applying for Social Security Disability, I feel that’s been covered, but rather about my experience.
Never expected to be on disability
I’ve been around MS my whole life. I was diagnosed at the tender age of 21; however, I grew up living with my grandfather who also suffered from the disease. He was completely disabled from it. I witnessed him going from a cane, to a wheelchair, to being bedridden, to even needing a ventilator to breathe. This disease is nasty, particularly if, like him, you don’t use any disease modifying medications. Even seeing all that, and knowing more than most about the disease when I was diagnosed, I never, ever expected to be on disability.
I expected my life choices to help me. I thought going to school and becoming a software engineer would be an extreme advantage to me. I foolishly thought, “ok, well, even if I can’t walk, I can still use my mind. I work with my brain, so I should be OK!” I had no idea the way that MS could and would impact my cognitive abilities. I didn’t realize just how much of an effect that fatigue could have either. Bottom line, even as someone who should have known better, I still was unprepared for what the disease would do to me.
Cognitive symptoms got much worse
My cognitive issues were what really started getting to me. When I look back, I see that these problems started years before I would end up leaving the workforce. I was not as sharp, I was more forgetful, I was distracted much more easily. Things that were easy to blame on aging or stress. I thought, “oh, I’m not as young as I used to be, that’s all.” I was still good at what I did, more than enough to get by, but I knew I wasn’t the same. My brain was never as sharp or as fast. I felt like my head was in a cloud for long periods of time. Then, in the span of a couple months in my mid-30s, things suddenly got much worse. I’d get lost going to work, I’d have no idea what I was doing at times, or even where I was. Forget about being about to write complex computer code, I could barely handle basic everyday functions and taking care of myself.
I finally went to my boss and explained what many people already seemed to know, that something was wrong. Next thing I knew, I was somehow at home and my parents were at my house taking me to see my MS specialist. So much at that time is a blur to me (so much of any time since is a blur). More MRIs and tests happened, and the next thing I knew, my doctor was trying to explain to me that it was probably time to go on disability. I of course thought he meant short term, I’d been on short term for a relapse before. That’s not what he meant though. These were consistent issues that were getting worse. To him, it appeared that I was slipping into Secondary-Progressive MS, a form of MS that doesn’t have the dramatic variation in symptoms. Instead, it’s a slow, steady progression of symptoms that may or may not have relapses.
Using a disability lawyer
I ended up on short term disability through my company, however, my doctor highly recommended that I prepare to apply for long term disability and to use a disability lawyer when applying. The staff at his office was even able to recommend a lawyer that other patients had used. I was skeptical about using a lawyer at first. Wouldn’t it cost too much? Don’t I simply have to fill out some forms? If my doctor says I should be on disability, isn’t that all I need? Turns out I was pretty naive to the whole process. While mulling it over, I spoke to a number of other people with MS who have applied for disability. I learned that the process is a nightmare, takes forever, and very often ends in denials on the first and even second attempts. The invisible nature of our disease, along with the lack of knowledge that most people have, make getting approved an uphill battle. We need every advantage possible when applying. It’s not fair, but it’s life.
So, I ended up meeting with a disability lawyer. He even came out to my house because travelling was tough for me at the time. He explained the process and the importance of the language you use when filling out the forms. A big part of his role was to fill those forms out correctly for me and to make sure everything was submitted on time. That sounds like it should be easy and everyone should be able to do it, but that’s not always how it works out. Had I had to go before a judge, he would have assisted me. With his help though, I was actually approved on my first application. After hearing so many nightmarish stories about people applying for and being denied disability, I was extremely thankful I used a lawyer. The cost was also minimal – only a small percentage of the retroactive payments I received once approved (basically, when I was approved, I received back payments from the time I applied).
A drastic lifestyle change
With it being so difficult to get approved, you’d think I would have been elated. That was far from the case. My career was important to me, working was important to me, providing for myself was important to me. I worked extremely hard to get where I was, it was my life. I was happy to talk about what I did for a living and now it’s awkward. Aside from a drastic lifestyle change (moving from six figures to disability payments is a massive change), being on disability is something that eats at me. It’s the hardest pill I have to swallow and is a big source of depression for me. That is all made harder by the fact that to look at me, you wouldn’t think anything was wrong with me, so on top of my issues, I feel a need to justify myself.
So if I have any advice for those who think they should be on disability or are applying, I’d say: talk to your doctor and see what they think. Apply early, because it takes a long time to be approved, and use a lawyer, it makes a huge difference. Aside from that, realize that the biggest struggle actually happens once you are living on disability. For me, living with myself and feeling bad about it are still the biggest problems I face. As always, I’d love to hear from folks in the comments. If you have a disability story you want to share or tips or anything at all related to the topic, please comment! The more we share our experiences, the more we can help each other.