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 Sunshine56 |
Do you want people to ask personal questions about your illness? |
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Posts: 41919 08/11/07 09:54
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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 wheelbench.
What about you?
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ponolops |
#1 | |||
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Posts: 1430 08/11/07 11:59 Quasimodo
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But others? Not really. I am nowhere near as badly off as you Mosken. I can walk and I feel that is my downfall. Wherever I am, shopping, hospital appt. doctors....etc. in I walk, (usually) straight and upright and I'm quite tall, 5' 9" so people look amazed when I have to lie down, sometimes on a bench in town. People can't quite get a grip on me not being able to sit at all, as I'm sure you have found. As it is so unusual, they really don't believe it and I can see it on their faces. The villagers here have known me since before this happened and they are all great. I go to dinner at their homes and they move furniture to get my bed in. Sometimes I don't like to answer "How is your back?" even though it is asked politely. My answer is "Still behind me" and smile at them. Then I change the subject. I know people can't really win as they're damned if they do and damned if they don't. At least most people have now stopped saying "surely there's something they can do?" which infuriates me. I can't believe they truly think I would be like this if there was an option! I'm interested in others thoughts on how they deal with this. Thanks Mosken. Penny |
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 Allis61 |
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Administrator
Posts: 6778 08/11/07 12:33 Alice
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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 my disability and pain being a focus when I'm around people. I prefer to have a "normal" conversation, like everyone else has. If strangers ask about my back, I'm quick to respond that I've had six failed surgeries, and I still have disabling pain, and then asks back about a totally different topic. I try to avoid more questions or the sad, "feel sorry for you" face many gives me. That always makes me feel awkward. 
But I do need to talk about my problems to someone, and I have people in my life I can discuss them with knowing that I don't make them feel upset or awkward. Like my mom, who has pain problems herself, or others who KNOWS how it is to live with an illness. Of course I can talk to hubby, but the more I talk about my problems, the more helpeless I know I make him feel. He's a "fixer", and this is something he can't fix. I prefer to try to let us have as normal as possible relationship. I don't want everything in our life to be overshadowed with the fact that he's married to someone with health problems. Most of the practical stuff around us IS, whether I like it or not. For so many years our lives consisted of doctors, hospital visits, operations and recovery periods in between. And to top it off we were parents to a child who was in and out of hospital and to and from docs for years. So right now, we try to let my health problems be a natural part of our lives, and don't talk too much about it. I'm not sure I explained this very well, but I hop you get the point. |
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amberlover13 |
#3 | |||
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Posts: 20173 08/11/07 12:44 Moderator
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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. |
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kiturah |
#4 | |||
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Posts: 7034 08/12/07 01:05 Medical Consultant
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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 more comfortable for me. |
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shadeaux63 |
#5 | |||
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Posts: 2592 08/12/07 03:15
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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 them," you may regret asking,but..." and then I let them know exactly how I am at that moment-good or bad.My family can tell by
how I act, so they really don't ask much anymore. Most of the time, I don't mind talking about it,but if I do, I just tell those who ask to catch me
when I'm in a better mood,and talk to me then.
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Implant Info Net |
#6 | |||
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Posts: 1735 08/12/07 05:22 Rosie
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Great topic, Mosken! I like my close relatives/frinds to be aware of how I'm feeling on a need to know basis.
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 talking health in general especially when promoting public awareness on health concerns but I do not like to discuss my own health problems other then it is a good or bad day with those that are close to me. |
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Racing Red Granny |
#7 | |||
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Posts: 3004 08/12/07 16:05 Nana again! |
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 the doctors have tried and what the results were. I don't ask others if I see they are using a cane when I meet them so I feel
people can be so nosey or rude by asking for details.
I have a friend who knows I have health issues and she really wants to 'mother' me. Sometimes it can be a bit much and I really wish she would lighten up. I have spoken to her and her answer is that I need the help and she will give it. I am actually sometimes embarrassed by her trying to help me in and out of a vehicle, carrying my bags, or some other way she has thought about. I know she really means well but I feel that because she is a widow, she really needs to be needed so it is more about her needs than mine. |
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chiefs star |
#8 | |||
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Posts: 94 08/12/07 18:35 |
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 in a very small town, and I hate when people whisper. My Family tough parents are deceased don't really ask. My brother for years
thought I was just a druggie. He just ask the other day how to even spell Fibromyalgia to look it up!
Last Edited By: chiefs star 08/12/07 18:40.
Edited 1 time.
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Cheryl Knepper |
#9 | |||
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Posts: 83 08/12/07 23:22 |
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 |
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Cheryl Knepper |
#10 | |||
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Posts: 83 08/12/07 23:27 |
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
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Cheryl Knepper |
#11 | |||
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Posts: 83 08/12/07 23:29 |
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
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page89 |
#12 | |||
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Posts: 192 08/13/07 01:33 ~ tom |
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.
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Sunshine56 |
#13 | |||
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Posts: 41919 08/13/07 08:25
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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.
You have lots of interesting thoughts here. Thank you for sharing your experience and
thoughts.
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MoodyBelgium |
#14 | |||
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Posts: 3729 08/13/07 21:39 Sleepwalker |
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 as I walk differently then.
It's strange though. I hate people fussing, but I also hate it when they react like : "Oh MS. Well they have meds now, don't they?" as if I shouldn't complain. Maybe I'm just difficult! 
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SunnyMary |
#15 | |||
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Posts: 4253 08/15/07 04:25 Mediator Babe
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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 with Mosken on that one. I like to talk about all sorts of stuff, and, frankly, I tend to spend a lot more time listening to my friends or sharing ideas or telling funny stories than talking about my illness. On the other hand, I really don't mind giving my friends and family a "status report" - I actually appreciate when they ask how I'm feeling this week. (In which case I can either say, "Pretty good!" or "Fever's up, I'm exhausted, but I'm hanging in there.") It helps them to know how much energy I have when we're talking (I may have to cut the telephone call short if I run out of energy, or sit down if we're standing somewhere together. I often say to people, "I have 15 minutes in my energy tank, and then I have to leave you."), and it's especially useful if we're making plans to go somewhere together. And, I'd have to agree with Kit and Shad - because CFS is only now becoming known to the general populace, I consider it my job to educate people about it if it comes up in conversation. Almost always, it comes up when people ask what I do for a living (what job I have), and I tell them that I'm disabled by Chronic Fatigue Syndrome. Lately, people have been very nice when I tell them that and they ask some good questions. I've read so much about it at this point, that I can help straighten out any misconceptions they may have about it. |
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DIVA6 |
#16 | |||
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Posts: 7271 08/18/07 18:27 Friends Host
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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.,
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inger lise ask |
#17 | |||
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Posts: 722 08/18/07 19:53 Surrehue |
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)
I dont look sick, I have nothing that show my problems, and then I start to tell, and feel stupid, I get a lot of symphaty, but also funny looks. When I put on my (?)# for resting my wrist, I get more symphaty... Even my friends look at me in a funny way, they say nothing, or say they understand, but I know there is something wrong. 
strangers, I feel they understand better, I can tell them more and they dnt know me, so I get more symphaty from them, kind of, ... I think 
However, I dont realy know how then tink hwen I leave them. Invisible illness is crap! 
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SunnyMary |
#18 | |||
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Posts: 4253 08/19/07 04:57 Mediator Babe
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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 mention it to someone or not - there's a certain amount of freedom in that. |
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