u/ExitWeird9697

I’ve had rapidly worsening mobility, and getting around with a cane and then walker was still very unsteady and exhausting. I’d been off work for 2.5 months, and I was desperate to get back to work. To my unicorn job, where all management knows everyone’s names, where there are regular check ins about how can we support you better, and where my team and I were the four musketeers, often going to lunch, pool nights, celebrating one’s housewarming. We were so so close.

So my doctor signed off on four hour work days to start. To see how I tolerated it. I got a folding power chair to save my energy and my job a workers comp claim. I roll in that first day to… nothing. Everyone at their desk and no one acknowledged my existence.

When the boss got in, she pulled me right into a meeting and told me that I really should just consider filing for disability. That she was stripping down my duties to the simplest possible projects. That everything of mine was already divided among the other three and will remain that way unless I get back to 8 hours, because we just don’t have a half time position available in this department.

I asked about the icy treatment, and she said they were angry at me, for bailing on them without explaining. And that this is just the latest example of be being a poor communicator. I was ignored completely for the rest of the day. Literally every other person outside my department was THRILLED to see me back.

Day two was open hostility. I was in a meeting (zoom with headphones on) when one of my teammates came up behind me harshly whispering “I hate you!” They bundled up in a little clique and were whispering about me. My boss watched it all happening and did nothing. At the end of the day she pulled me into another meeting. She said I should really smooth things over with them. I said I really didn’t understand what was happening, they’re pissed because I had a medical crisis? She told me there was a rumor that someone saw me walking around a grocery store. So they think I’m lying, gaming the system and soaking up the attention in my wheelchair. Also if I won’t make things right with them, she’s going to force a group meeting to make it happen.

I immediately emailed in a complaint to HR. Who has acknowledged a “personality conflict” within our department and will be coming up with ideas and strategies to help us move forward.

I wrote back quoting the company’s harassment policy, using words like ableism, harassment, and the mandatory process that’s been completely ignored.

I have a meeting with HR on Monday.

I have a cute little folding power chair that I need to get into the back of my Kia Sportage. If it’s the beginning of my day, I can pick it up, but if I’m exhausted, there’s no way. Thankfully there’s always been someone around who aggressively offers to help, but I’m a “I can do it myself!” person.

Looking up appropriate ramps, they’re all so expensive… all I really need is a glorified plank of wood to get the job done… is there something out there that isn’t >$1000??

Prior post: https://www.reddit.com/r/ehlersdanlos/s/6hloJMUVGY

Today was my first half day back. My coworkers barely acknowledged my existence, and when my boss arrived, she pulled me into a meeting where she heavily encouraged that I apply for disability. That if I can’t increase my hours eventually to full time, well she doesn’t have a .5 FTE payroll position… and that she’s taking away all tasks from my plate that might be even remotely difficult, leaving me with the most boring, the ones that run automatically.

On top of that, she said I was a poor communicator, that after three years I should know what I don’t know and ask. Even though she just changed around everything I do with almost zero training.

In reaction to saying something like, “well I don’t appear to be Mrs. Popular out there,” referring to my teammates, she said that my coworkers WERE mad at me because I didn’t tell them I was going on leave. Despite being told to sort it out or go on a PIP, and that moments after I got confirmation of a doctors note it was the end of the day, I didn’t say anything… instead I went to my car and had a full-blown anxiety attack.

She has a way of presenting information in the nicest possible way, like she’s your friend, but this is absolutely manufactured language to stay in compliance. It feels like coming back was more trouble for everyone and that I am just human, and not a payroll robot like her.

Today was brutal, and it’s just Day 1. My connections are strained at best, gone at worst. My work has been nerfed, and everything that motivated me has been diminished. If 4 hour days is physically borderline (in a wheelchair now), and emotionally difficult, I have no reason to push myself.

I intend to ride out the week and give an honest assessment of my physical and mental state. If by the end of this week, coming back wasn’t worth it, how do I go back on leave gracefully?

As I’m moving through the health care system (in CA) trying to diagnose and understand and heal(?)… I’ve become my own subject matter expert.

I went to the doctor and just honestly told her what all is happening. Weak and painful joints, overwhelming fatigue, regular falls and fainting, horrific neck pain and migraines… you know the drill. And she looked at me like I was speaking another language. Like, “huh, that’s weird… anyway…”

So I researched. I read probably the entire internet. I bought and read Disjointed. I spoke to every family member I have left. Now I know how to describe my symptoms, but giving her all the magical key words is not getting her any closer to diagnosis. She conceded hEDS and costo (though she won’t name it), but I’m certain there’s POTS and CCI or something similar.

Meanwhile, I bought myself a cane. A c-collar. An assortment of braces and compression gear. I already had a walker from a prior injury which I’m using more and more. I bought a shower chair so I don’t delete myself. I’m eyeing a certain wheelchair. I’m looking at a place that may be a little scammy but they’ll sign the papers to get me a handicap placard.

This has been the longest freaking process ever, and anything I have to show for it I did MYSELF. That’s not how this is supposed to work dammit.

Like this might be a duh moment for the rest of you, but I’ve been going to Renaissance Faires since I was 6yo. We have traditional garb and always took it very seriously.

As my symptoms progressed and walking became an issue, I’ve caught myself looking at my corsets longingly, and wishing I could just wear them in my daily life.

💡

Is it because of the massive support they offer? Maybe I SHOULD be wearing a daily corset!!

LOCATION: California

I had mediation yesterday. We landed at the mediator’s proposal and have til Monday to accept.

Except I think I’ve been so completely undervalued, I would absolutely hate myself if I did accept. My lawyer says that this is a good deal and he feels that he’s hit the threshold of having done right by me. Honestly, he has been wonderful and fought like a shark, but I think mediation was a place where all accountability and recognition of liability was completely skirted.

So I need another perspective.

I was pregnant. I went on maternity leave from the fire station where I worked. The chief was pissed that I was planning to be out for months instead of handing new baby to husband and going right back to work. Within days the fire chief gave me a suspension letter, started an internal investigation, sent me a termination letter, THEN got the results of the investigation, then scheduled a Disciplinary Hearing where they threw everything but the kitchen sink of accusations at me. Some were the doings of others, some were minor administrative misunderstandings, some weren’t my job, and some escalated into criminal allegations.

I think we counted over 175 “reasons” listed to support my termination. During pregnancy leave.

With that overwhelming theatrical display, no one knew which way was up and they upheld my termination.

BUT the timing of all this alone requires that the employer prove that the reasons were non-discriminatory… and through this whole process, they’ve never had to do that. There has been zero proof of anything, just a ton of new accusations every time the chief gets talking.

Firefighters are heroes. My lawyer says a jury trial would be filled with people who couldn’t separate this behavior from their special status. And that the 175+ accusations would be overwhelming and confusing.

My economic losses were in excess of 200k.
My emotional distress was calculated at 1x (200k).
The fire department’s opening offer was 2,500.
After a ton of talking, the mediator’s recommendation was 97,500. This insults me.

I want to take this to trial. Am I insane? What would you do if you were in my shoes, if your wife were in my shoes?

EDIT: the offer was 97,500, which would be 50k to me. I don’t need 50k now (though it wouldn’t hurt) but 50k for derailing my career, for destroying the last month of my pregnancy, for hearings and loss of health insurance with a new infant, for starting from scratch all over again. For four years of silence and being reviled by my town. All because the Chief was pissy and vengeful.

I’ve been diagnosed with hEDS since I was 16 but my Kaiser doctor didn’t assess me and just added it to my chart

I can’t sit more than an hour. I can’t stand more than 15-20. I need complete support rests before I can go again. Driving in a car longer than 40 min gives me a migraine. Just holding my head up for over 4 hours gives me a migraine. I have weakness and pain in ankles, knees, hips, lower back, shoulders, hands and neck.

I also have massive cognitive issues like losing time, disassociating, getting lost in multi step processes.

I am in finance. I can’t make mistakes, like ever.

My doctor will be extending my medical leave or putting together a plan to get me back to work. However I can’t fathom my work being cool accommodating all my true restrictions.

Is it possible to work? Doing what? Nothing with my brain or hands or body… what the heck else is there??