Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (SunnyMary) — Sun, 19 Aug 2007 04:57:20 GMT

Invisible illness is crap!

So true!

But in some situations (not all the time), I think we're lucky, because we ARE able to get around in society without drawing attention to ourselves. I almost always feel tired, but sometimes it's nice to go out and do something sort of normal anyway. We get to choose whether to...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (inger lise ask) — Sat, 18 Aug 2007 19:53:38 GMT

When your illness shows, people "know" you have troubble,but still they may ask stupid q like; there must be something they can do, and; have you tried this

My illness doenst show, and if I put on makeup, dress well, and walk along looking pretty , this is my problem (not beeing pretty hehe)
...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (DIVA6) — Sat, 18 Aug 2007 18:27:08 GMT

as a single blakc woman..i try not to tell new suitors about it too much...which makes issues when u cant do things. i dont yet have a good "pat" answer for ppl that dont know me.,

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (SunnyMary) — Wed, 15 Aug 2007 04:25:09 GMT

This is such a great topic, Mosken! Thanks for starting this thread. It's really interesting to see what people have to say.

my main reason to meet other people is not to talk about my health problems.

I agree...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (MoodyBelgium) — Mon, 13 Aug 2007 21:39:30 GMT

I usually hate to tell strangers about my illness. That's why I try to avoid to use my cane. I have no problem with relatives asking me about my illness though. I have a good friend who is great at enquiring about my health. She just says : "you okay? Just tell me when you're tired and we go for coffee." And that's all. I love that. No fuss. I hate people fussing over me. Hubby and Isabelle know that too, so they don't ask. They just see when I get tired...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Sunshine56) — Mon, 13 Aug 2007 08:25:16 GMT

Penny and cherry, my disability was much more like yours many years ago. In the beginning I could walk for an hour. Sitting disability was my main problem. I could even do sport, but just not sit. I know how shocking it can be on other people. It is like they think you are terribly ill and dying. I wish I knew the name for sitting disability back then.

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (page89) — Mon, 13 Aug 2007 01:33:29 GMT
I'll only discuss it with people who have similar experience and even then somewhat cautiously. I'm all too familiar with the, "there's nothing really wrong with you" feeling that i get from some people.

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Cheryl Knepper) — Sun, 12 Aug 2007 23:29:57 GMT
that's horrible 2 b so presumptuous in such an uncaring way...the only positive is that these ppl have shown their true colors...sherry

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Cheryl Knepper) — Sun, 12 Aug 2007 23:27:45 GMT
your posts made me realize that when in considerable discomfort, i dont want 2 talk about it either -- only if i think the talk could lead 2 something helpful 4 someone sherry

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Cheryl Knepper) — Sun, 12 Aug 2007 23:22:43 GMT

mosken and penny, since my problem seems closest 2 penny's ill prob feel similar 2 her i. e. the amazement expressed about this "invisible" disability...im not concerned yet w/ questions and in fact the more ppl who know about me the more awareness about these virtually unknown disabilities...what raises my bp is societys lack of concern once the store, mall, dr ofc, public trans etc know this problem is out there ,,,getting discon a lot now so ill stop 4 now

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (chiefs star) — Sun, 12 Aug 2007 18:35:24 GMT
I don't like when I am in my wheelchair and I get strange looks, after my son's bad wreck nomatter how I felt it was him and all about him. I recall cussing this man out in Wal-Mart because he told my son to get out of the f-----g chair and walk like a man! I don't care that I get strange looks, I do care when people try to get into my health. I try to just say knowbody knows about Fibrommyalgia, and needs to learn by reading on the net or books. then I change the subject I live...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Racing Red Granny) — Sun, 12 Aug 2007 16:05:51 GMT
I really do not mind family or close friends asking me how I am; I don't have to go into any explanations and I can just say whether it is a good or bad day. But when I am meeting new people, I hate if they see I am having some sort of difficulty. They ask what the problem is, what have I tried, some have suggestions for me to try this or that or ask why I haven't done this or that. I really hate when they try to get into a good conversation over it or want to know what surgeries...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Implant Info Net) — Sun, 12 Aug 2007 05:22:53 GMT

Great topic, Mosken!

I like my close relatives/frinds to be aware of how I'm feeling on a need to know basis.
I have a jar of marbles that I use to communicate with DH so I don't have to talk about my energy/pain level for the day, but it gives him a clue as to what to expect from me for the day.

Around others, I would love to talk about other things and get my mind off my illness and focus on other things.

People do ask sometimes and I don't mind...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (shadeaux63) — Sun, 12 Aug 2007 03:15:31 GMT
Since I walk with a cane, but only if I'm walking a fairly long distance(the longer I'm on my feet, the worse my legs and back hurt),I always have neighbors asking why I don't use it all the time, and strangers always ask what's wrong with my back or legs. Because I know a lot of people aren't very educated on fibromyalgia,I don't mind taking the opportunity to educate them a little.Those who know me well, know that if they ask how I feel, I'm going to tell...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (kiturah) — Sun, 12 Aug 2007 01:05:26 GMT
Oddly I don't like it much if people I know ask me, as I have no useful answers. These days I can say I am doing well overall, thanks to 18 mo. of IV antibiotics, so I have an easy answer, but I didn't before, and didn't have a way to say gracefully or even know gracefully what the truth was.

But strangers I like, because I can educate them about Lyme disease and its coinfections. I don't have to talk about me but about what is happening to people in general. Much...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (amberlover13) — Sat, 11 Aug 2007 12:44:14 GMT
I only explain my health to those that need to know, or I am close with....sort of an "need to know basis" so many normal people just give you that look that I despise that tells me that they couldn't begin to understand if you spent 20 hours trying to explain it, that I don't even bother any more.
THey seem more sympathetic if I am using my cane, but otherwize I get that "there is nothing wrong with you, and we both know it" look.

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (Allis61) — Sat, 11 Aug 2007 12:33:03 GMT

Friends and family: Some times I do, but most times I don't

Stranger: Don't like to talk about it at all

I'm not comfortable to talk about my back/neck and my pain at all. After I joined Friends I've learnt to be more open with my closest family, and that's a good thing. Now I tell them if I have days with excess pain, and then they know why if I'm in a bad mood or skip doing things I normally would have done.

But I don't like...

Re: Do you want people to ask personal questions about your illness?

feeds@yuku.com (ponolops) — Sat, 11 Aug 2007 11:59:45 GMT

Mosken!

Yes, I like friends and family asking how I am, although my three children are so used to me being 'crocked' that they usually ignore it all. Can't blame them, as I have suffered with a bad back since before they were born and the eldest is now 36! Hubby only asks if I am quiet or snappy, as he knows I am in pain.

But others? Not really. I am nowhere near...

Do you want people to ask personal questions about your illness?

feeds@yuku.com (Sunshine56) — Sat, 11 Aug 2007 09:54:25 GMT

If I am with close friends or relatives, I usually like them to show interest in my disability. As long as it is not too much. But my main reason to meet other people is not to talk about my health problems.

I usually dislike when strangers ask any questions, although I understand why they do if they see me on my...