Out at work

We had a staff meeting yesterday.  Towards the end, my boss announced that another department is doing a “fitness challenge” and wanted a volunteer from our office to participate.  I’m a little fuzzy on all the details but the general gist is this.  All departments recruit at least one member to sign up for a certain time period of semi-public sharings about how many times they took the stairs, walked a mile, ate some kale, shit like that.

This is so not me.

My boss said “I did it last year and it was a pain in the ass, so I’m not doing it this year.” and then we went around the room and each of us tried to get out of it in various ways.  Our office coordinator, an unbelievably cheerful and accommodating person, said “I already was recruited by X department” (she has a lot of friends in X department) “and last year I did it with Y”.  Assistant director didn’t say anything, but put his finger on his nose, the universal gesture of “not it!”  So, me.  “I’d do it if I could think of some way to adapt it to me and my health stuff, but let’s see, taking the stairs?  Not something I do.  Food?  Let’s see, I can’t eat before noon, so the whole ‘healthy breakfast’ thing is out…and there’s an increasing number of things I can’t eat, many of them are what’s considered ‘healthy’.  I don’t know how I’d do this without a mass disclosure of a lot of health stuff, and while I think it would be good for people to have the educational experience, I’m not sure that I want me and my body to be the lesson in such a public way.”

So, in other words, “not it!”

It makes me apprehensive to have to bow out of these sorts of things.  I worry that at some point, I will be seen as taking too many liberties, too many “special” circumstances.  But damn, it’s work, you know?  I need my energy at work for WORK, not for sprinting up and down flights of stairs while the training montage music for Rocky plays.  My big “fitness” challenge is managing to do my PT exercises, and you know, I’m just not in the mood to share those with the group.  I have to deal with public judgement in a bad way almost daily.  Why ever would I sign myself up for participation in an activity where my abilities will be officially compared to my (mostly healthy) peers?  That’s like inviting a really bad day, every day.  No thanks.

Previous Post
Next Post
Leave a comment


  1. Because you ARE working, that on its own is a major fitness challenge but for people to understand what lies beneath such a “ghost” of an illness, you would have to give them a whole lot of educational experience. That being said (and you brought that up), perhaps you should write and distribute 😉 a small pamphlet on “fitness challenge for people with connective tissue disorders and fibromyalgia” (because we all know the latter is more heard of). In there, you could put three pics such as 1) sitting straight as an exercise; 2) how to contract your calf muscles to reduce POTS (the “tippy toe” exercise while standing facing the wall; 3) using a table top cycle for 5 minutes.

    There! I’m frustrated while writing this. Does it show????

  2. Dang it… I had a funny comment –yes, another comment–and I hit something and it disappeared. Maybe it was a sign to stop commenting so much? So much to share! Had the same experience but with “all staff painting the bldg’s interior.” Why? I worked in non-profit management and disclosed my disability! Got forced into quitting soon after I refused. I really like Sheep’s idea, but most people don’t “get” any illness. Fibro is the worst, since I thought I had that for 10 yrs. Frustrating! Maybe your work should have a “Disability Awareness” day instead of this thing. Dumb-dumbs. Reminds me of “Gutbusters” from Awkward Black Girl, the little web series I love. Seriously, I think you do work at Gutbusters.

    I’ve been trying to find a pamphlet or anything on EDS since my Dx to help educate people I know, as well. Now that I can ditch the fibro Dx, people no longer tell me I have a mental disease–how nice–and are curious. Nothing out there and the EDNF isn’t helpful. I’ll buy a pamphlet from you if I can find a spare shekel. You’re great with medical facts and the dioramas. Go for it!!!

    • I’ve run across a small few, this one, for example http://www.docstoc.com/docs/79761412/Updated-EDS-Pamphlet, this one http://www.ednf.org/dmdocuments/eds-brochure-high-res.pdf, and this one which is not free and which you have to buy mostly sight unseen I think http://shop.edsers.com/EDS-Awareness-Pamphlets-Pamphlet.htm.

      I’ll think about it. Need some stock photos of people looking exhausted or in pain. LOL. Actually, now that I think of it, really just a “normal” looking person would be fine. The whole point is invisible illness.

      My specific office gets it. They truly do. We do education for the rest of the place on disability, including a large section on “invisible disability”. And I think my immediate coworkers at least act as if they feel what I have shared with them is valid. I have had to gently remind here and there that a lot of this is new for me still. I used to work out, walk for miles, stay up late with little lasting consequence, eat poorly or well without it destroying me, choose to overdo it one day knowing that I had a reserve which would allow it, choose to be lazy one day knowing that tomorrow I could be extra energetic and diligent and not be taken down by my body. The loss of that is still, relatively, new and I don’t always handle it gracefully.

      My larger job? Yeah, for the very large part, they don’t get it. Definitely not.

      • These pamphlets are great! Thx, D! Maybe I didn’t enter the right words into Google? I like the middle one the best since it’s rather original, but I hate that it says fibromyalgia right in the middle. I’m trying to erase that from my vocab. Is there truth to that? I think I have horrid “myalgias” due to the EDS, not from a pain processing disorder, even if I was told that for 10+ years. My geneticist feels the EDS 86’d the fibro. Well, guess #1 will be sent to the family. Thx again!!

        Also, glad you set me straight about your work. Phew! I do know you work in that dept. so was sort of confused, but not totally due to my chronic nightmares w/trying to keep working in the “friendly, non-profit world.” Not friendly at all and definitely not understanding. I don’t know how you’re still working, either. I’d drive home in tears from the pain and evil bosses and I’m no crier. Makes me so mad b/c I need the money and am a really hard worker with a lot of education. Well, glad your dept. seems to have your back.

      • Wrong order. Love pamphlet #1’s style, but sending #2 to the family since no mention of fibro. Unless I confused myself again… I think that’s right. 🙂

    • And I’m sorry wordpress ate your comment! 😦

  3. My last job was definitely like that. And not everyone at my current job is great, but I think (so far) my immediate coworkers and supervisor get it. There are times when I am quite literally staggering through my day. If I didn’t get a ride with my husband, I’d have a much harder time working. As it is, it tends to add to my day in hours but that’s why I have a couch in my office. It helps a lot that I can usually organize my schedule around bad days, and today, for example, I am working from home. That’s twice this week, and I am truly thankful for it.

  4. Starting a “thread ” again. I REALLY envy you, but in a good way. It is so awful not working, even though I know work is hard for you. Aside from the endless poverty, you lose who you are if you are a “career-person,” the social life from work–not always the best–disappears, and then there’s the thought that you’re just “taking up space” in the world. I tried to volunteer for yrs too, but same story. I’d turn a 4 hr/wk job into a 20 hr/wk job!

    My resume is garbage now since I haven’t worked full time in a decade, but I like to dream that if I had a big, comfy chair (w/feet up and down pillow behind my back) and could work just a few hrs in the middle of the night–my more functional time–that I could somehow have a job again. RIGHT! Then you mentioned the sofa and I know you work from home some days. Amazing! Plus the ride–big bonus. I drive a stick b/c I will only drive stick Mustangs–great on an EDS body. Why did I ever end up in crappy non-profit management w/all the hormonal women and drama??? Evil, evil people. I doubt I’ll ever work again, but your comment gave me some hope that someone might recreate my “blogging environment,” where I can spend a few hrs “working” from the aforementioned chair in the middle of the night (with stretching breaks). Isn’t that what the ADA was all about… The whole “accommodations” thing? LOL. Thx for sharing…


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: