exactly not

My first week at work, I was briefed by office mates on the “volunteer” requirement that staff share for events.  E.g. if you don’t “volunteer” to help at the one in September, you have to do the one in May.  And everyone “volunteers” for the one yesterday.  About a week and a half ago, our department had a big retreat style meeting.  At it, calls for “volunteers” were made for the event that happened yesterday.  Knowing that this was mandatory volunteering, and that if I didn’t take the lead I’d be assigned a task for this event, I approached the coordinator and said “Hi, I’m _________.  I’d like to help out with this, but I do have some physical needs.  I can’t stand for periods of more than about 10 minutes at a time and I can’t work in a warm environment without feeling sick.  What can I do?”  She thanked me for “volunteering” and said she’d get back to me.  A few days later, I got an email telling me that I’d be working in the lobby of the building basically doing door work for this event.  “It’s the coolest place in the building and you will be able to sit down if you need to.”

Flash forward to yesterday.  It was actually the warmest part of the building.  It was up two narrow, steep staircases of marble steps made slippery by the rain and with handrails that were too low to provide real support for the climber.  And there wasn’t a single chair in sight.

While we stood (emphasis on the standing) around waiting for her to give us directions, my hands started to swell up red and puffy, a sign that my blood is pooling in the dependent places and not making it up and around the rest of me.  My feet got hot and painful.  I heard the coordinator telling some other folks working in the lower lobby that after the stragglers came in they could go in to the event or “go about your day”.  I asked if that was the case for those of us working in the upper lobby.  She said yes, and one of the younger workers who was assigned to the downstairs lobby said “Ok, so what you really want to know is ‘when can I leave!?'”  Tee hee.

And right there, I realized how I end up disclosing health information at work that I’d rather not disclose.  That.  Comments like that.  Attitudes like that.  I know it was a joke.  But I don’t know these people and they don’t know me.  Hell, I didn’t know half their names.  And now, for anyone who might be inclined to think this way, I am the slacker who wanted to get out of the mandatory volunteering as soon as possible.  I’m not the good worker who is a team player giving it my all.  Thanks girlie, really.


Probably partly because I felt like I had to prove that I was a team player, I stuck it out and tried to work.  I was there for about a half hour (an hour total, half hour of waiting and getting instructions, half hour of working).  Then the ear ringing, dizziness, nausea, headache, and palptitations got to be too much.  I told a coworker that I had to go sit down.  I found a side room with a couch and sink and put a cold paper towel on my neck and laid down.  A short time later, another coworker came in.  “Are you ok?” he asked.  “I’ll  be alright.  I’m just a little dizzy.”  He was concerned and I felt like I should explain so he didn’t think he had to call an ambulance or something (again, disclosure I’d rather not do).  “I have orthostatic intolerance, it means my blood pressure gets really low when I’m standing up for any length of time and it’s worse in a warm environment.”

He said he’d let me rest, asked if I wanted to go back to my office.  Honestly, I wanted nothing more but I couldn’t imagine navigating those stairs then the busy Big City streets in my current state.  And I already was depriving them of one volunteer….me.  If I took someone with me, I would be not only calling more attention to my inability to pitch in but also taking someone else out with me.  How selfish!  I stayed in the side room for a bit.  People came and went.  I felt a bit better but not great.  And I was angry.  I was angry that the coordinator had been so careless with my needs, angry that the girl made a joke at my expense, and angry that now my already busy and difficult day was going to include feeling terrible for most, if not all, of the rest of it.

I did eventually go back to my office, unescorted.  Which was probably stupid but I really did not want the bullshit, the professional minefield that goes with being sick at work.  I saw the coordinator on my way out and said I was sorry to have to go but the lobby was just too much for me.

Back at work.  I told my boss a little of what happened.  She was concerned and (to my relief) seemed pissed off that the coordinator had been given a head’s up about my needs and did such a piss poor job of accommodating them.  I figured at some point after the event, the coordinator would email to check in…to see how I was doing and oh I don’t know, apologize for giving me an assignment that was exactly NOT what I could do.  Nope.

I’ve been wondering if I should write to her.  I’d like her to know that what I stated to her initially was not a preference but a need.  I’d like to know by what process she arrived at the conclusion that her chosen assignment would be ok for me.  And I’d like to know how she heard what I said to her initially.  Maybe I didn’t communicate this right.  Maybe I can do a better job in the future.  Or maybe she’s just a fucking idiot.

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  1. So frustrating. People don’t get it

    I also struggle with standing. Need to do the step touch, step touch, or calf raises if I plan to stay conscious. If I get warm my hands and feet swell. Too hot and standing has equaled fainting a couple of times. So I carry ice packs now in case of emergency.

    I hope they take you more seriously in the future.

    • Ice packs are my friends. One year for valentine’s day, my husband got me a basket of hot and cold packs. An amazingly thoughtful gesture. I am blessed that I have people in my life who get it.

      I used to do the leg movements to keep my blood going. I did them unconsciously, now I’ve had to become aware of doing it and stop because I am likely to pull something. I messed up my left hip so bad doing this at a poster session (standing, overheated room) many years ago that I was seriously hurt for months after. This is one of those things that makes me think Ehlers-Danlos IS the right diagnosis.


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