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Are You No Longer Working Because Of MS?

Do you no longer work because of MS? Let's talk about it.

I left work one day about 10 years ago and never returned. My symptoms and unpredictability from MS landed me on disability. All these years later and I still struggle with not working. Financial issues aside (though we can certainly discuss that because it's a huge impact), I really have problems with my mental health from not working. Maybe it's my age (I became disabled at 35), but I constantly feel like I don't contribute enough to the world and that I have no purpose. Like many, I grew up at a time and with a family that prided themselves on their work ethic and I am sure that contributes to my struggle as well. I find myself often wondering what I am even doing in life? What purpose do I serve?

How about you? What is your experience with not working because of MS? How has it impacted your life?

  1. Hi Devin.. I read your stories all the time here and thank you for your input on MS .. I am in the process of disability with SSDI and waiting for the determination. I had to stop working last Oct due to a very stressful job..I am a nurse Case Manager at a very big hospital . I was unable to handle all the changes that was taking place in my hospital and had to go out on FMLA.
    I finished that and then was given non -FMLA medical leave.

    I was terminated last month because I have not been medically cleared by my neurologist & neuropsychologist.
    I was diagnosed with generalized anxiety, depression & mild cognitive decline. I am 59 years old now and don't plan on going back.. As u already know people with MS can't have too much stress and my work stress was affecting me.. I know that I would like to do something once I get the disability. I was thinking about volunteering...I am so sorry that you became disabled at such a young age..
    It must be very hard for you and I appreciate you here on this forum.
    Thank you!!
    Lisa H

    1. / I'm at the beginning stages of all of this. I cannot mentally handle the stress of my case load anymore. I'm currently out on FMLA for a spine surgery. Therapist says I should not return and go out on disability instead. I sure cannot afford to just "not go back" but I work with very dangerous people. I'd love to hear how you began your disability claim.

    2. hi Lisa, best of luck with the SSDI. I was finishing up my BSN when my symptoms hit. I only got SSDI on my 4th application submission. I had a great referral for an atty In Salt Lake City. I cannot recommend at all the larger companies for SSDI applications. They are mostly conniving scheisters. I’ve learned to be more easy on myself. Also I had S1-T11 back fusion surgery last September.
      I’m thinking of you in peace. Happy 60th birthday. I got my first ever tattoo for my 60th…and happy Spring y’all!!!

  2. Wishing you the best of luck with that SSDI determination. I remember those days as real nail-biters, and despite reaching out to the contact person, I was not told unofficially that I won my claim. I had to wait until the first check arrived, 5 months after filing my claim! I know I was lucky to win on the very first claim; so many people have to hire attorneys to do the re-filing and it can take YEARS.

    I wish there could be a more elegant way to get booted out of the rat race than what you experienced, but sadly, many people with chronic medical conditions are not spared their dignity, let alone an easier, more gradual end to the financials we set our sails by, back in earlier, healthier, stronger days. It's still a slipshod and unsavory experience with endless variations, most of which end our working careers by blindsiding us, simply because they have no model to work by for how to legally terminate less-than-desirable employees.

    Thank you so much for expressing your impressions of Devin's piece in such breathtaking detail. I know he deeply appreciates it when people respond to his work the way you did. And DO let us know of any updates to your situation in your status line, or the venue of your choice, won't you, Lisa? We care 😀 Cheers, Kim, moderator

    1. I was able to find out what doctor does the disability claims for our area and I was lucky enough that it was my personal doctor and with her knowledge of what put down on my disability that I was able to get ok’d for the first claim. So I would advise anyone who is up for disability to find out who the doctor is in their area and make contact with the doctor to see what they can do for you! It made my retirement much easier for me because of my doctor and her knowledge and experience.

    2. that was my experience as well. Because I usd the technical terms for the symptoms that made it impossible for me to work, I was granted SSDI on my first application. That was in 1992, when I was 44. Fortunately, I started on a very effective ABC first line disease modifying therapy eight years later that resulted in only one more exacerbation, in 2008, and I've had no discerrnible disease activity since then. Hell of a way to retire, though!

      Therry, a Team Member

  3. Thank you Kim.. I will keep you guys up to date on my situation.. I know someone who got SSDI in 1 year so I am keeping my hopes alive!! She also has MS like us..

    1. Hi and the rest. I also read most of your posts and find them relatable and down to earth. I stopped working full time 10 years ago at age 47, so young but now as young as you! It took a bit to get SSD, like it does most I needed an attorney to push through after a denial. I am able to volunteer for my church in many capacities, and also earn a small pay for website and social media work I do for the church. It's a small check but it helps. You used that key work PURPOSE!! We all need purpose! Whatever that is can vary greatly from person to person. It can be making a phone call or sending an email to check on someone. And Devin, not for anything but all the writing you do on this site is a huge part of your purpose! Your time and energy, and talent are very much appreciated by me and by hundreds of others!! Keep on keeping on!!!!

      1. Thank you ! I think purpose is definitely the key point. I miss the money, of course, but it's the purpose, that reason for getting up each day. I do absolutely look at my writing and moderating work here as a big part of my purpose these days (and it is far more rewarding than my old career). I'm glad you've found some things that give you purpose!

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