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Time to stop work?

Discussion in 'Finances, Work, and Disability' started by nettle_tea, Aug 19, 2018.

  1. nettle_tea

    nettle_tea

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    I'm struggling with the decision to stop working. I'm not looking for advice - just support & validation.

    I have what I'd class as moderate ME. I was very, very mildly ill for a few years, then last fall I had a relapse that resulted in recurring leg weakness; since then I haven't been able to walk for more than a minute or two. I cut down to part time work and was improving until I was unexpectedly forced to move, then I ended up mostly bedbound for weeks. I have been on short term disability for the last 3 months. I'm doing better, but my mobility seems to be permanently affected. My insurance is covering a custom wheelchair, which will arrive next week.

    I was hoping to return to work part time, but my workplace is incredibly unaccommodating. I work for a prestigious university library, and their approach to disability issues is to exploit every loophole in the ADA and make the process as difficult & traumatizing as possible until people give up. My doctor has submitted 8 rounds of paperwork for them in the last year. My paperwork kept getting bounced back for various reasons - because I was undiagnosed and couldn't fill out all parts of the form, because my symptoms didn't fit their template, because the information wasn't in the exactly right place on the form, etc. Since I couldn't get accommodations, I had to pursue a part time schedule by taking one day of FMLA leave every week. My doctor and I had to file my FMLA paperwork 3 times before it was accepted. I applied again for accommodations again 2 months ago, and my application was ignored until last week. Now my department head is claiming the library can't function ('undue hardship') if I go back on a part time schedule, even though I have been successfully completing *more* than my required job duties on that same part time schedule for the last year. I actually have proof of this in writing - tons of emails where I'm asking for more projects & reporting on my progress.

    Their arguments would never hold up in court, but they don't need to, because they haven't put anything in writing. They just won't move forward until I participate in the "interactive process," which is basically an endless cycle of paperwork, verbal abuse, and more paperwork. Example: my building isn't wheelchair accessible, and the head of Disability Services interrogated me about why I needed a push-button for the back door. "Why can't you just stand up?"

    So the idea of going in to a meeting and begging for permission to be paid less to complete exactly the same job responsibilities is not sounding that great right now.

    I am really still quite sick, and me going back to work successfully has always been a long shot. It was more about trying to postpone the inevitable to make myself a better candidate for long term disability coverage. (During the first year of coverage, my plan will not cover pre-existing conditions; since I have had vague symptoms for years before my first massive relapse, it could be argued either way. Sidenote: I really wish someone had told me about the magic 30 day window for benefits enrollment... I was young & dumb & HR lied to me. I didn't get another chance until I got married.) I realized that while I can probably fight to get the accommodations, best case scenario: the stress will hurt my health, I'll end up with the bare minimum supports, and I will continue to be treated like dirt when I return.

    The worst part is knowing that my managers are pushing this hypocritical "diversity and inclusion" initiative. They even force us to sit through slideshows about how "accessibility is a top priority" so they can pat themselves on the back about the big, showy renovation they are planning, which will obviously include wheelchair ramps because by. law. it. has. to.

    The choice seems kinda obvious the more I write about it. But I'm still scared to tell my family, as this will probably mean my partner & I will need help from them financially at some point. Plus, it's so depressing to end my career at this point: my first day of disability was my master's program graduation day.
     
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  2. *GG*

    *GG* senior member

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    Sorry to hear this, it sucks. I worked in the great Progressive State of MA and it was always an uphill battle. I would suggest getting your ducks in a row and applying for disability, hope you have LTD at work and apply withint the prescribed time frame for a claim.

    Unfortunately my lawyer did not do that, and I will likely lose out on 50% of my income :(

    I would suggest the 2 day in a row CPET testing, you do have PEM/PENE, correct?

    GG
     
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  3. nettle_tea

    nettle_tea

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    I'm also in MA! And yes, I do have PEM. I'm probably at the "perfect" level of health to do the test - I'm well enough to pedal a bike if I have to, but I'd be a complete and utter mess on day 2. Where did you get the test done?

    I have LTD, but my eligibility depends on my doctor convincing the LTD company that it wasn't a pre-existing condition before June 2017. She's willing to make the argument - and it's perfectly plausible - but if they dig it could get murky. It probably helps that I was diagnosed with ME and not CFS, because I definitely didn't meet ICC criteria until August.
     
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  4. Dechi

    Dechi Senior Member

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    I am sorry you have come to this. Reading your story, it is clear to me that you need to think of your health first, even if it means to stop working. As you said, I think you already have the answer to your question.

    As for the 2-day CPET test, be very careful, as it can be very hard to recover from, especially if you are severe. It should only be used as a last resort, for disability claims purposes.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    You need to put your health before anything else, to not do this can be really disasterous. (its something I know only too well, I was pushed to having to work part time when I shouldnt have been and many years later still suffering the consequences of it).
     
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  6. Mel9

    Mel9 Senior Member

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    It is a really difficult decision for you. Sounds as though you do have a supportive doctor but not a very supportive work place. I guess you should listen to your body. If you are severe it might be a mistake to risk your health but there is a lot to weigh up. Wishing you all the bestthrough these hard times.
     
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  7. nettle_tea

    nettle_tea

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    Thank you everyone! I am feeling more comfortable with the decision to stop work. My doctor is very supportive - she validated how terrible my employer is being, and she has been encouraging me to consider long term disability if my body is telling me to do so.

    I'll give some more thought to the CPET. I suspect it would be difficult to schedule before the date my LTD company conduct their initial review (I would switch from STD to LTD in November), but there are future reviews to consider, including SSDI. I see an autonomic specialist next month who will probably refer me for a tilt-table. I'm also going to ask for a skin biopsy to confirm small fiber neuropathy, which my neurologist is fairly sure I have. Hopefully he'll have some familiarity with ME and will be able to refer me for other testing.

    I've heard that Dr. Systrom in Boston does clinical & research work with ME/CFS patients, including a particularly invasive version of the CPET. I'm not sure I could handle that! But it might be good to see him.
     
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  8. DoggerFisher

    DoggerFisher Senior Member

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    This is a really tough decision @nettle_tea I know I need to stop and it seems so attractive but so difficult to cope with the admin involved!
     
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  9. sissypop

    sissypop Senior Member

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    I’m in the same dilemma. I’m still working but it is so hard. And it’s all I can do. I’m always skirting around being fired for too many missed days.

    I don’t really make enough money to “live”. Like I said it’s all I can do ( more than I can do to be honest) and I have no energy to clean my house the way I would want to have to be able to have company over. Not that I have energy for that anyway. Forget hiring someone to come in and clean. I keep the basics clean but I’m losing the battle with clutter.

    I think if I didn’t have to work I could pick up and organize better and have energy enough for company once in a while. But that’s a moot point because I would be homeless in a short period of time because there’s no one but me to pay the bills.

    Having said all that I sometimes have to make myself be thankful I can drag myself to work, at least most of the time anyway. Even though it’s not a job that I really enjoy, it can be very stressful and feeling terrible only adds to it.
     
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  10. rel8ted

    rel8ted Senior Member

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    I feel for those of you who are in the process of deciding if its the right time to stop working. My decision was basically made for me, by my husband who intervened with my PCP and they finally convinced me I was going to be bed bound if I kept up. But, that is what we are told to do, right? Put on your game face and make the best of it. Even when your boss is hateful because she knows you're sick, even when they try to make it impossible to work and point out that you are now an inconvenience to them, even if you are still performing well. Just the fact that I needed to sit would infuriate my boss. I was hired with that restriction and had a great reviews for 9 years before she came along. One day I finally had enough and asked her what make and model of broom she rode to work, them smiled and walked off while that fact that I just called her a witch sunk in.:whistle:

    All in all, I wonder if I would have been better off taking care of myself sooner, but I sure can't change that now.
     
  11. sissypop

    sissypop Senior Member

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    I totally understand. I worked in accounting for years and years. Work 50+ hours a week most times and always had work backlogged because they wouldn’t hire enough people but I made very good money until I just couldn’t keep up that pace anymore. My elderly parents need caregiving so I moved in with them and took care of them until they both passed away. It was very hard but I could totally do things at my own pace.

    Had to go back to work and took a customer service job at a call center. I could sit the whole time and no work backlogs as you can only take one call at a time. Then punch out and it’s someone else’s problem. Customers can be a nightmare then add to the fact there are so many “quality” points you have to meet on every call and the speed they want you to work. My average call time has to be under 400 seconds. If you aren’t meeting this or improving each week they want to know why. If you fail to meet this and are not showing steady improvement you will be let go. And you can’t be short or hang up on a customer so this can be very difficult to reach. And over 95% of the time calls are back to back. If they have time between calls they feel they have too many people scheduled.

    Edit. I make 1/3 of the money I used to make.
     
    Last edited: Aug 20, 2018
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  12. Wishful

    Wishful Senior Member

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    If it was only vague symptoms and a professional doctor wasn't able to diagnose it, there's no way to prove that it was an existing condition. I don't expect any expert on ME/CFS can even say whether vague symptoms prior to meeting the ME/CFS criteria qualifies as ME/CFS. Of course, that's the kind of thing that lawyers will be happy to argue over for years (fully paid hours for them) without reaching a conclusion.
     
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  13. DoggerFisher

    DoggerFisher Senior Member

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    @sissypop sorry for your troubles. I only work and walk the dog (most of the time!). Have had to give up other jobs (relationships, houses etc) because of this. worried more now as older so it might be the last one I get to give up. also alone. parents still alive but mother is ill and father estranged (he thinks I'm a hypochondriac!) Boss has been supportive up to now I get to work from home part of each day am very very lucky but other day she doorstepped me asking if I'd tried Bowen technique as it had totally cured her husband's sinusitis..... It takes it out of one!!
     
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  14. sissypop

    sissypop Senior Member

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    Oh @DoggerFisher i so understand. The fact of not looking sick and the fact I’ve pretty much given up on doctors make everyone even more skeptical. “Yeah, she’s mentally disturbed “ ;)
     
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  15. DoggerFisher

    DoggerFisher Senior Member

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    @sissypop if I wasn't mentally disturbed before I sure as hell am now! it's a constant dilemma between telling the truth and pretending everything is fine work wise. I don't know the answer. worst thing is I stopped for a holiday which has switched off all the adrenalin and whatever else is required to keep going so am super poorly. should I share my holiday pictures of the bedroom ceiling on Facebook?!
     
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  16. sissypop

    sissypop Senior Member

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    I know, if I quit work I think people will think even less of me. If I keep working they will think “ see she’s not sick”.
     
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  17. TenuousGrip

    TenuousGrip Senior Member

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  18. DoggerFisher

    DoggerFisher Senior Member

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    anytime you want a chat let me know or we will fill up a whole thread.... :rofl:
     
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  19. sissypop

    sissypop Senior Member

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  20. Strawberry

    Strawberry Senior Member

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    This is a tough boat to be in. Sorry for everyone in this thread! I'm trying to plot my "escape" also. Tough decision...
     
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