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View Full Version : But you don't look sick?


KPeveler
04-12-2007, 03:27 PM
Here is a great website for all you who have "invisible illnesses" or have family members with unseen problems. they have great articles and the forums are amazing. i must say it is one of the best sites on the web! it has really helped me in dealing with my invisible illness!

www.butyoudontlooksick.com

mommasita
04-12-2007, 08:01 PM
My second favorite spot..I can not let it go..
Thanks for that link.:hug:

Mackey Mouse
04-13-2007, 04:52 AM
Thanks for the website, K... Do you know how many times a day we hear that? Meanwhile some of us are walking around with sicknesses of all types, but just do not look like we are sick..

luvwinnie
04-13-2007, 08:17 AM
Good idea to post this! I've been visiting it for about a year now, great site.

KPeveler
04-13-2007, 02:00 PM
I rely on the site, for a whole variety of things! EDS is so rare that there is very little information out there other than "we can do much." its great to talk to other people with it, and to have people understand when you wanna just vent :)

KPeveler
04-13-2007, 02:01 PM
I rely on the site, for a whole variety of things! EDS is so rare that there is very little information out there other than "we cant do much." its great to talk to other people with it, and to have people understand when you wanna just vent :)

jann1033
04-13-2007, 09:09 PM
i've gone there a number of times and often think of it when i read those "sweet":sad2: " IMO they didn't need a wheelchair but wanted to take advantage of something or were to lazy to walk" threads that come up every now and then

i vacillate about the forums, ( any cfs forums i mean, not just there) since they sometimes it seems to get down to "whose sicker". i used to go to a number and it just made me center on my illness more with out really helping ... really I'd rather be more constructive via educating myself....so i usually just stick with newsletters/articles but i can see how it could help some vent. that's just not really me usually

salman
05-07-2007, 06:25 AM
Yeah that site was indeed very helpful for me, however I have some queries to which I am yet to get any suitable answers. For instance there are some health complications that necessarily do not exhibit any symptom and come to notice only when they have reached an acute stage, so in such cases what are the ways to identify the problem early?

Valentine
05-07-2007, 09:21 AM
Wow.. that is actually my very good friends website! Funny to see it here!

She is really very wonderful.. and the information is invaluable.

Kathy

KPeveler
05-07-2007, 09:38 AM
its wonderful to have a place to vent, or ask funky questions... i feel better venting to other people in a forum meant for venting, for instance, rather than calling my family or friends complaining.

plus they were very helpful in finding me the right type of doctor. i found a whole new specialty that may just be a lifesaver. they dont provide medical answers (after all they are just like you and me!) but i did not know there was a dr who specializes in rehabilitation and whole-body health as opposed to a specific system. I have so many different drs that i was beginning to feel like a jig-saw puzzle, with a different dr for each piece.

daughter_of_amid_chaos
05-11-2007, 10:58 AM
I hear that all the time with Celiacs. I will head over and take a look!
Thanks for posting.

Yensid Srevol
05-14-2007, 04:16 PM
Here is a great website for all you who have "invisible illnesses" or have family members with unseen problems. they have great articles and the forums are amazing. i must say it is one of the best sites on the web! it has really helped me in dealing with my invisible illness!

www.butyoudontlooksick.com

Thank You Thank You Thank You!!!! Now I have another new website to go to that has people like me on it! I have had CREST syndrome (a form of scleroderma) for several years yet people tell me that I don't look sick (if they only knew what it was like to live in my body! Hugs to you, friend!

barkley
05-16-2007, 04:48 AM
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.

2manypets
05-18-2007, 05:32 PM
I'm so glad I found this thread. I have "invisible" disabilities and can't talk to my DH about them. He doesn't believe in Fibro, CFS or the degenerative disc desease that has my spine looking like the letter "C" He'll just call me lazy or weak (He's a good man for the most part though)

It'll be nice to be able to ask questions or vent or whatever with people who'll understand and give me there opinions. I get very frustrated around here, when I feel like I must do it all to be a good mother, wife, provider.

Thanks to the OP for the link, it's very appreciated.

jann1033
05-22-2007, 06:14 PM
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.

my kids are grown now but when they were young, sometimes i told people but i didn't usually mainly cause i have CFS which has a tendency to mean " lazy crazy" to a lot of people. if asked i just said sorry, "i have some health issues that make it difficult committing to a preplanned schedule but i will be happy to make___ ie make cookies " ( some thing i could do way ahead , freeze etc)if they didn't need something like that i told them to please remember to ask me when they did and give me some notice...you can't stop people from thinking what they want to.
i do have a tendency to not talk about my illnesses to others though since i don't like to have every conversation turn to it...i'd rather "forget" about it for a while if i can actually go somewhere and most people inquire to be nice which is fine but i'm more than a giant ball of sickness and am a lot more interesting in other areas of my life:laughing: it is a fine line though for sure.

jann1033
05-22-2007, 06:20 PM
I'm so glad I found this thread. I have "invisible" disabilities and can't talk to my DH about them. He doesn't believe in Fibro, CFS or the degenerative disc desease that has my spine looking like the letter "C" He'll just call me lazy or weak (He's a good man for the most part though)

It'll be nice to be able to ask questions or vent or whatever with people who'll understand and give me there opinions. I get very frustrated around here, when I feel like I must do it all to be a good mother, wife, provider.

Thanks to the OP for the link, it's very appreciated.
i got CFS almost 20 yrs ago and for a long time husband tired to be supportive but i knew just didn't get it.....fortunately(???) for me i was bedridden for months when i first got sick so it was pretty obvious to him "something" was wrong.. but i printed out a paper for him that explained it and it seemed easier for him to take from a third party...i think it was on cocure i'll try to find it and post a link