“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

• Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
• I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
• The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.