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My Disability Story

My Disability Story

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.

Thanks,

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Drcuervo
    1 month ago

    Hi Devin. I found out I had RRMS in May. I’m a professor of Film Visual Effects and I know that this will be my last year teaching. My doctor already recommended disability and my sis knows of an SSDI lawyer. This really was the hardest decision to make, yet I knew it was the right one. I could already tell that my ability to teach was being affected. The next semester has begun and now I must explain to my new students that my slurred speech does not mean I’m drunk. A tough decision indeed. Yet the wise one.
    Be well dood.

  • Devin Garlit moderator author
    1 month ago

    Thank you @Drcuervo, it’s an extremely tough decision. I’m not sure that knowing it was the right one makes it easier, that was almost worse for me. However, it’s important to look at it all as not an end, but as a new beginning. Sure, there will be challenges, but being willing to adapt and find a new way of living can make it a lot easier.

  • tunderdue
    7 months ago

    Devin, I too find it difficult to admit I am “disabled.” And It doesn’t help that unlike you, I have had MANY denials for government Social Security Disability! Every time I ignore my disability, I get the dreaded “foot drag” in the midst of activities, the sudden bladder, sometimes even FECAL explosion, and the sudden, intense weariness that makes me just STOP whatever I am in the middle of doing. And I live with the fact that, if a JUDGE did not even see my “disability,” perhaps I am just meant to live this way, with no compensation. But I, like you, am smarter than that. I know that we with Multiple Sclerosis deserve what many of us have worked so hard to attain. We of course deserve to be awarded Social Security Disability (SSD), so that we may continue to contribute to society, as best as we can. I have been fighting for SSD now for 5 plus years! And I will keep fighting, with my persistent, disability lawyer at my side.

  • Devin Garlit moderator author
    7 months ago

    Thank you @tunderdue, so sorry to hear you keep getting denied, I hope that you and your lawyer manage a breathrough soon.

  • sandydemop
    7 months ago

    Hey Devin, thanks for sharing you story. I relate, of course. I was able to help get my husband approved for disability without a lawyer but if I need to go that route, a lawyer will definitely be an asset. I have built a business for myself as I can no longer work full time but even that has its limits, which I’m trying to ignore! Thank you for your hard earned wisdom

  • tunderdue
    7 months ago

    Sandy,
    We have a similar situation! I also got disability for my husband, without needing a lawyer. But that was because my husband has Parkinson’s Disease, which now also has led to his Dementia. We waited the “standard” NINE MONTHS for his Social Security Disability (SSD). But Parkinson’s Disease is one that even our frugal government can’t ignore. With OUR Multiple Sclerosis disease, our government may play many, many games! And I have learned, as has Devin, that a disability lawyer often is necessary! We MS adapters deal with too much in our daily MS battles, to also be straddled with SSD issues! So I thank God that I at least keep some peace of mind, as my adept lawyer fights for me. And I pray that YOU too will keep up your strength, and will gain SSD compensation, whenever you may need it.

  • bruscor
    2 years ago

    Devin,
    Thank you for sharing your disability story. Many parts truly resonated with me. I too was a high earner and now receive SSDI. Like one commenter below, I am an attorney and practiced as a litigator and then trusts and estates counsel. My last position was as an associate probate court judge – a job I truly loved thru and thru…. I stepped down from my position after undergoing a neuropsych exam and being told by the neuropsychologist that I would be better fit in a job “folding sweaters.” Talk about a feeling of deflation; that doctor let all of the helium out of my balloon. . Nevertheless, with the help of my neurologist and my husband, I applied for disability. After 2 denials I quit foolishly thinking I, in my state or in any state for that matter (as I had in my practice represented attorneys facing Bar complaints and knew everyone needs the impartial eyes of counsel) could represent myself and hired an attorney. We went for an “On the Record review” where the Administrative Law Judge reviews the medical evidence and supporting evidence and makes a decision without a hearing at that time. If the judge finds against you, you CANNOT be denied without a hearing do you would just have to continue to wait for a hearing date (which could take 2 years with all the backlog). A denial WITHOUT a hearing is a denial of one’s right to Due Process (a fundamental principle in our legal system). The ALJ granted disability in my case based on his on the record review. I was and am ever so thankful for that decision, because I, like many of us with MS, don’t “look like I have a disability.” So, at 40 years old, I am officially “retired” from my legal career. I have been left to wonder once more who I am absent that career and personhood. Trust me, it has not been easy, but I have turned inward and wandered outward in this life of mine and have rediscovered parts of myself that I left behind decades ago, some little pieces I wanted back and some I I just discarded. So I encourage all my fellow MS’ers to take the Road Less Traveled in their lives. Live the Now. On a less philosophical note, if you know disability is in your future, or regardless, document, document, document every symptom you have with your neurologist as his or her notes will be Exhibit A in your application. All the best, and thank you!

  • Devin Garlit moderator author
    2 years ago

    Thank so much bruscor, really appreciate the comment! I think you’ve laid out some important information on the process for people to see. It also sounds like we have an awful lot in common! You are so right about documenting everything, it’s crucial. Not only for a potential disability situation, but I find it important when seeing my doctor as well as for my own sanity.

  • PetieJ
    2 years ago

    Hi Devin~you have a Gift for writing, my friend! I believe there’s a reason for Everything!!
    I’m on disability, tho ironically it was due to my back ‘issues’. I have no recollection of how any of it came about but I do know I didn’t have to go to court, use an attorney, etc. I filled out a lot of papers at home and prayed and waited for the answer. The day I received a letter in the mail that I had been accepted for disability I literally fell to my knees. It’s a daily toss-up as far as which is more disabling…my back, after four surgeries or the MS symptoms. My cognitive issues really make me feel “less than”. Often I have to strain for every descriptive word I can muster to describe the one thing I can’t get my brain to grasp. I can see it, I just can’t say it! Then there are the days the fatigue is so bad, I haven’t the energy to speak anyway! Thank you very much for what you share. It helps more than you know.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much PetieJ! I appreciate you saying that and taking the time to share some of your story. Cognitive issues can be so tough for me too: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/

  • potter
    2 years ago

    I haven’t needed disability, I am close to the age I can collect Social Security, I haven’t worked a regular job very much but I am able to draw off my husbands in another year. My husband hired a financial advisor for our retirement years and he said that if I needed disability I would be better off waiting to draw off my husbands account. He said you can’t have both and I would get more money if I wait. I just wanted older MSers to know there is another option. Potter

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Potter! I’m glad you mentioned that so others can be aware!

  • dlynngillan
    2 years ago

    My disability attorney didn’t win my case for me. I was able to get help shortly after I went in person to the Social Security office. I think that seeing a real person and not just the documentation really helped. Hope this suggestion helps someone out there.

  • dlynngillan
    2 years ago

    Devin-Thank you for sharing your story. It was hard for me to go on disability, too. I have to fight the battle within sometimes so I don’t feel bad about myself because I receive a government check. But, my faith and prayer have helped quite a bit. Prayer is a daily friend to me. Maybe it can help others with MS, too. Thanks, again, for having the courage to write about your experience and admit what can be very difficult about having this disease.

  • Devin Garlit moderator author
    2 years ago

    Thank you very much dlynngillan! That internal struggle we face is so often worse than our physical struggles, as I’m sure you understand. I do agree with you about in person meeting. I think anytime you can put a face to a case, your chances should be better. It’s important to make them realize you are a person.

  • jpolito001
    2 years ago

    Devin: Thank you for sharing your story. I don’t have a disability story — yet. I’ve long wondered when the time will come thaI I will need to go on disability. I am lucky that my fatigue issues are limited and manageable. I don’t have debilitating cognitive issues — that I am aware of! My job and my company have been flexible enough to accommodate my mobility issues so they don’t prevent me from doing my job — so far. I’m sorry to hear that you “feel bad about yourself” for being on disability. I don’t think you need to justify yourself. I think that you sound very brave, honest and responsible. You earned the right to take disability when you needed it — I will do the same. It’s the right choice to be able to provide for yourself. You’ve obviously had to sacrifice a lot of the would-be financial rewards and personal satisfaction of your career. That’s tough to take. Thank you for being brave enough to honestly share your experiences to help others. Be very proud of that. It’s a great gift.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much JPo819!

  • 1i1qsvg
    2 years ago

    I was diaganosed at 25. I taught middle school for almost 20 years until I just couldn’t do it anymore. Teachers in my state don’t pay into social security. I applied to the state for disability and my acceptance included the fact that I was unanimously approved. What a Godsend. My insurance has paid for several treatments including Lemtrada. It’s hard to give up your career, but you do what you have to do. I appreciate everyone sharing.

  • Devin Garlit moderator author
    2 years ago

    Thank you 1i1qsvg! We very much appreciate you sharing as well!

  • Johan
    2 years ago

    Dear Mr. Garlit, great article and once again thank you for posting and presenting an opportunity for this fellow MS warrior (assuming you consider yourself a MS warrior.)

    It was April, 2012 when I was diagnosed with SPMS, I think I was 42. Recently sworn in as an attorney and some people I know still can’t believe it, both things. I continued to work as best I could despite MS and being new to the legal field, at least this side, if you know what I mean, found it to be increasingly difficult to button my shirts, tie a tie, walk and maneuverer myself around a courtroom. The MS clinic I was diagnosed at had a social worker who introduced herself to me shortly after my diagnoses. She suggested I apply for disability sooner rather than later because by the time I got approved I might really need it. She was right.

    I applied thinking I didn’t need to be on disability. I was denied. I continued working and filed an appeal. Thinking back, it was kinda weird going through this whole process of diagnoses and disability as a newly sworn in attorney. I applied for a legal job to a lot of places and eventually threw out the proverbial shingle. People used to ask me what my specialty was and I responded, “what do you need?’

    I did not get a lawyer for my appeal. I prepared and presented my own case for the Administrative Law Judge who heard my case. He found me disabled and unable to work. I wonder if my resting my cane on a table in clear view of everyone in the courtroom swayed his decision. It was unintentional on my part. Part of what made me a good lawyer I think. Anyway, today I have no trouble agreeing with that Judge. My last day of work came shortly thereafter.

    I was representing a client in a criminal case. It was jury pick day. I was the third lawyer to pick which meant I had to wait a few hours for my turn. We chose what we thought was a good jury, my client and I, and it was then and there that I discovered MS affected every part of my body from head to toe, from my thinking to my vision, my speaking, dexterity, stamina, walking, balance, not to mention bladder and bowel issues. It was afterwards that I informed my client and the judge that I would be finding a replacement lawyer to run the trial because in my present condition I was not going to do it.

    I’ve been on disability a few years now and thank goodness because it has been a godsend. I didn’t know that paying all that social security tax as a young employee would be so beneficial. But it has. Today I live pretty modestly, have what I need and am taking MS medication partly because of articles like yours Mr. Garlit. And it wasn’t until I started attending law school that I started using Mr. and Mrs.

    p.s. I got a great young lawyer to handle the case and the prosecuting attorney dropped the charges.

    JE

  • Devin Garlit moderator author
    2 years ago

    Thank you so much for sharing your story JE, I very much appreciate it!

  • Nancy W
    2 years ago

    I shared a long version of my story in the story section. Here I just want to share the last few days of that story.

    I remember the day I decided that I couldn’t work anymore. That morning, I had a dentist appointment and was supposed to work in the afternoon at 1 for 4 hours. I woke up too fatigued to shower and rushed to the dentist, but I had gotten the time wrong, so when I got there, they couldn’t take me. I got in my car and burst into tears. At 1;00, I arrived at work, dirty an upset. My supervisor asked me why I had not done something that I was supposed to do the day before. I realized I just could not do it anymore. I was in pain and needed physical therapy but with working, I couldn’t do it all. I thought I would be back but it never happened.

    My advice for applying for SSDI is document your symptoms in a journal. I think this helped my case.

  • Devin Garlit moderator author
    2 years ago

    Thank you Nancy! Documenting your symptoms is fantastic advice! Not only for SSDI, but it can also be extremely helpful when seeing your doctor as well. ( My memory tends to make such a journal a mush have)

  • 1jdxgn
    2 years ago

    You are honestly the only author I currently follow. If I could write or type, I would be speaking in so many ways your exact words. Alas, I am no longer a good writer.

    SSDI: FIle application by hand 1st, with the help of someone close if needed. The process of completing the form yourself is very, very difficult. To me I felt like I was writing a thesis (hard when sometimes your mind gets too overwhelmed and overstimulated that it literally shuts down.
    You will then be denied. Then you hire a lawyer, and SSDI lawyers do not make a penny if they lose case. If you are approved, lawyer’s pay is capped.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much 1jdxgn! I very much appreciate that!

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