i hit the site via the link provided-it looks interesting but it does'nt appear to have anything on my situaion (strokes).
since there are obviously people on this dis thread that deal with invisible disabilities i'm going to ask- do you ever get frustrated with not wanting to disclose info. re your med situation but feeling as though in some cases you have to just to preserve your sanity/reputation?
reason i ask is because i have elementary school aged kids, and it never fails that since people know i do not work-they seem to assume i'm a sahm who could be a driver for field trips, volunteer for class parties...and that's just not the case. i don't work because i had to retire out due to 2 strokes. while i can drive myself and my kids in some situations (do not do freeways-kids know they have to keep chatter to a minimum cuz of anxiety issues)-i choose not to drive anyone one else (i lost some peripheral vision, some hearing-i can safely legaly drive, but i will not take on the responsibility/safety of someone elses child in my vehical). i realy can't do much in the way of volunteering because (1) with my vision and hearing issues it's very scary for me to be around children who tend to dart in and out of my field of vision, the sound levels put my nerves on edge, (2) i have some issues with short term memory loss-so being in a planning position makes me exteemly stressed (i live by lists, calendars and filing systems-dh knows not to change things on me at the last minute or deter from our systems-i've found that's not easily accommodated in volunteer/committee type situations), and (3) since i get migranes, insomnia and bouts of fatigue with no rhyme or reason-i cannot guarantee i can follow through.
the issue i seem to find trouble in dealing with is how much med. info. to let people know. to look at me i look fine-and i don't want people nesc. knowing of my med issues or it becoming a topic of conversation among my kid's peers. i've tried in the past advising teachers of minimal info. so they know what i can and can't help with, but it never fails that some other parent whose involved on a committee or volunteering for something throws my name in as someone who can help out. then i end up getting phone calls, always turning down what they think i can do and being perceived (in my opinion) as someone who should'nt be asking to do the 'easy stuff' that they try to reserve for 'working parents'. i think i am also perceived as 'stand offish' since i tend to try to keep the phone conversations very short and not chatty, and i'm not one of the moms who stands around and chats with the others at drop off or pick up (with both strokes i had aphasia for a time-and i still get words confused such that i am not comfortable engaging in long conversations unless i am realy familiar with the person and they are aware i may not always use the right words).
so how do you balance it out-i don't want to have to plan on telling every teacher, every year and then having the info. passed on to the room mothers, but it's getting very frustrating. it's to a point that since we recently moved to a new state/school and dh is able to do drop off and pick up i've purposely avoided going there as much as possible (seems like the 'invisible' parents don't get hit up for things beyond the stuff that's requested via mass flyers).
any suggestions would be appreciated.