I guess I fall in the I wouldn't wish this on my worst enemy category. I'm afraid if I did, I may burn in hell.

I have my days tho. I must look worse or something, because in general, people have been over-attentive. That has its downside too. I bearly even open a car door for myself lately, and I always have some one hovering over me when I walk on the snow and ice.....like, that helps, we would both go down!

My docs have been really good lately too....so, I can't complain, but, I know before things got this bad, at times, I did wish this on others.

MrsD has a point, in not looking too good for the docs, and I tend to do that. When they start poking and proding lately, I let them know what hurts, not buck up, like I used to. I have learned to tell them my symptoms, not my theory of what I have.

I think the point is, that SOME people can be really unempathetic and cold. I think that some people are just like that. Some people are just naturally more narcisstic. It is hard, but, try not to take it personally. I know it is hard. Also, make your doc appointments as early in the day as possible. You get worse care in the afternoon. Docs and nurses are people and they get tired as the day wears on. They are pressured to jam ever growing numbers of patients into less time.

I look at it this way, we are all born with certain strengths and weakness, and some people are born with more empathy, others, not so much. Just like physical strength, some have it, some don't. I won't ever be an astrophysicist either, but, some of them, may not have been good nurses, teachers or social workers. All people have different characteristics.

Also, you can't convince those people otherwise, so don't waste your breath.

You can't convince any one of anything, save your energy for where it does the most good. You will know where that is.

I told my hubbie to remain healthy because he might have to push my wheelchair someday, he promptly got rheumatoid!
My primary doc told my mom I am in unbelieveable pain everyday on her last visit, my mom no longer questions that I look okay so what do I have?
As a last resort buy the book "But you look okay", if the person is worth the money.
If I leave the house without makeup, well I am pretty sure that would convince anyone...............its a habit, but I'll keep it in mind!

Those who aren't receptive will have their turn...trust me! I do believe that what goes around will get back to those who bite you! Some I've known who were cruel? I'd had back issues? THEY Got back issues, severe ones...when they'd laughed at my own problems. Same with family deaths and other issues, they got it back on their own with INTEREST! Honestly, now, I don't care about others outside my immediate circles as they just don't care and are not willing to learn to care!
For the medical community tho? We really aren't able to complain constructively to any 'medical association' or the like about insensitivity, lax diagnostic ability nor actually doing harm! Nor can we construtively complement med professionals who DO CARE and DO work for us! This part is truly criminal in my book! There have been times I'd like to go to the first neuro's office and start swinging something heftier than my cane all thru the offices! In essence we are as patients powerless about critising the medical professionals who treat us, and it's worse if you are in a smaller metro area or regional area to boot! Less to choose from, less to seek help from and further to go!
As for 'putting on the face'? I don't have to any more! I've aged over 20 years in less than 10! I do not LIKE IT! And as for going out? I do try and put on make-up? But I really don't care if it's perfect! Because I AM NOT!
I DO WISH Docs could FEEL what we feel for one day, better FIVE DAYS! That'd be the 'appetizer'? You all know what I mean by that! HUGS to all! -j

I despise the "competition" of "I must feel worse than you do because I have (fill it in)."

Why do they do that, for attention? For crying out loud, I don't even want to mention my illness let alone be challenged about it.

I really needed that help carrying my bags, and if I hadn't just stopped abruptly, & sat down- no one woulda realized it.[/QUOTE]

HI, thanks for sharing the reality of invisible disabilities, especially neuropathy pain. My PD friend usually exclaims that I should wear a sign saying "NOT as good as I look". We laugh, because her tremors are worse, so people eventually do pick up on this. I go for the no pride method, asking for a wheelchair in advance of any trip, or bring my cane. Works wonders in the drug store.

I agree with Mrs D. the need to dress depressingly to allow the doctors to at least see a picture of something not quite normal, is a good strategy. Folks just do not take our words at face value. Whether friends or medical professionals. It is always a surprise to me how heartless and self-absorbed the general population can be. I have had to develop a sort of walk the talk attitude in public, and the opposite in private with friends. Friends have a tougher time handling my health challenges than I do. Their fears are greater than mine. I wish you luck in getting some kind of system to portray the right level of dysfunction in the right situation. But first and foremost, avoid identifying with this part. It is supposed to be the theater of life playing itself out, rather than a person who forgets she is in the theater of life. I choose to believe I am completely well underneath my issues. It helps to pretend this is true, when I am alone, at least most of the time. Best Wishes - TT

As I work day in and day out, smile at all my coworkers, get over animated with the little kiddies at our school ... I am dying on the inside from all of the pain. Every movement makes me ache, my body burning from head to toe, yet there is no one there that would ever know anything is going on. I can't blame people for not knowing, since I keep putting on a pretty good act, but part of me doesn't want the entire world pitying me every time they see me! The other part of me just wishes that these people could somehow understand what I'm going through, although I would never wish this illness on my worst enemy!

Right now I'm trying to work out flying out to Minnesota for Mayo Clinic's pain rehab program. I'm really wondering what all my coworkers will think when a seemingly normal looking/feeling individual (at least in their eyes) leaves work for 3 weeks for medical reasons.

It's nice to know that there are wonderful people like all of you who could relate and really know how a person with this illness feels. I'm just so sorry that you have to experience this.

It's a VENTING session! And we all need THAT in a safe place like here.
As I've said, I no longer care about how others perceive my pain. It shows on my face, how I move and all the extra gray hairs I've gotten that I really didn't need! The lines in my face? Can't do much about. The way I walk I can do some things about. The gray hairs? Other than use harsh chemicals [which I seem to be super-sensitive' to now?] I can't do too much. Sigh?
IF someone 'doesn't "get" it?' They aren't gonna "get" it any time soon. Even in trying to be a help to others in pain? They really cannot always grasp that YOU GET IT!
We could all be like this , or this: But...we choose not to be so. I'd much rather have my , get it out and over with:
We must share, even in the worst of pain? Most here don't try to make it a 'my pain is worse than yours'? Kind of event. Mainly because we don't really KNOW of your pain and experiences. But we can share about our pain, what we've learned and that there can be hope.
Hugs for now and 's - j

As long as we remember,'j'
that this is a public 'safe place' and if anyone who posts here,
'googles' their i.d. name - these posts will pop up.
And, sorry to say, will be in the 'web' for just about forever!

So much for privacy.

I have often wondered if insurance companies employ some narc to read this stuff and make sense of all the medical history on here to figure out who is who....

I was amazed to find out my husband's employer has people reading emails. Some dork sits in a dark room and reads emails and submits what they feel to be problems to the grand poobah to dole out lashings. And those lashings will continue until morale improves. Sheesh.

That was when we bought phones with internet! Our own phones and our own internet, with private email and messaging.

The admin could make these posts not public. Other forums have that feature. I don't know how much private information is made public or available for purchase on here. I suppose I should have read the reams of privacy policy before I clicked on the 'Accept' or 'I agree'. Kinda like a credit card....don't read the fine print and oh, oh.