a reminder:

http://neurotalk.psychcentral.com/sh...hlight=privacy

I didn't mean to sound cruel, I just want others to feel what it's like, not have it. You know, walk a mile in my shoes, then tell me how "I" feel!

My mom used to say, a good cry is good for you! I remember my mom would tell me that having a good cry is good for your system. It feels good to come here and let it out.
Many of us were also taught that being a cry baby or a whiner is not acceptable. Being weak or complaining to others is not attractive, no one wants to hear about our problems day in and day out.
Frankly, I get tired of hearing myself complain about my problems day in and day out! We get tired of being in pain day in and day out!!!! Can you imagine how our family must feel trying to remember it all the time? Trying to adjust their lives around us all the time? It must be hard to make constant exceptions for us. I try to remember where their heads are at the time.
My kids are young... in their early 20's, and like Bob's son, have to be reminded that I'm sick... that my feet hurt, that I need extra rest... they just plain forget! Their brains don't think outside their own little gravitational pull! At work, I am afraid to complain, afraid that I will be passed over for the promotion or put on the lay off list because I'm not as strong or as fast as the others. I've been laid off because I'm not as productive as others.

We do have an invisible disease... one that we can take out or put away at our convenience. One that others can't see unless we want them to. It works both ways. We can choose to hide our disease, or we can choose to use it.

Here is my biggest fear... I don't want people to think I just pull it out when it's convenient! I don't want people to think I just "Play the disabled card" when I want to. I really do save it for when I'm really tired and just can't take the pain any more! I try not to burden those around me as much as possible... but when it gets too hard, then I ask for help... but the problem is, do they think I'm "using my disability card" to get out of work?

Do any of you feel that way too?

First is PRIVACY. Well know that anything posted HERE IS public? Thus if the insurance narcs want to track you down they mite... However, how and when you use any 'public' names? cand and might confuse them. Different names for different issues? or something of that ilk.
The only thing I can suggest is that one always be totally and completely CONSISTENT in phrasing vis-a-vis any and all on-line inquiries? tho Rephrasing issues on other sites so that no one key word leads?
Back to the key issue tho? Privacy is that we are a sort of 'unique' group? And I truly wish more docs would lurk. I know of at least one case where a doc DID lurk and realise that he could help a person in his area! Whoo hoo! To us all for our venting! Sometimes some GOOD DOCS DO READ ABOUT US -I'd Like to hope that's to 'keep in touch'? But I cannot know. That we might establish a sort of communication network w/ Docs from HERE is a sort of dream of mine? Maybe not now, but in the future?
Most importantly one where us who have neuro issues don't have to say either: Don't panic or Got to an ER NOW? Since we're not docs? Just victims.
My heart is with all here and I wish all well! You are fighters! Keep fighting! WHAT IS TO LOSE by the FIGHTING? Much more is to gain! 's j

"Here is my biggest fear... I don't want people to think I just pull it out when it's convenient! I don't want people to think I just "Play the disabled card" when I want to. I really do save it for when I'm really tired and just can't take the pain any more! I try not to burden those around me as much as possible... but when it gets too hard, then I ask for help... but the problem is, do they think I'm "using my disability card" to get out of work? "

I hear you, Terri.

Like a lot of people here, I have days that are better than others. On a good day, I can seem pretty with it. On a bad day, I'm a confused, stuttering, pain-ridden disaster. Most days, I'm somewhere in the middle of that. I think this lack of consistency can make people think you're "putting it on."

Like you, I also don't say anything unless I feel desperately ill. Often that's when I'm being pushed past my energy limit (having to go to hubby's boring, but too loud, office party) or being stressed (a famiy disagreement). Consequently, my pleas to remove myself from the situation may seem convenient.

Still, those closest to us should know better and it breaks my heart when we're accused of exaggerating by them. Don't we get enough of that from doctors? If my family and friends had any idea what an effort it takes for me just to get through the day, let alone with an artificial smile on my face. It's the times when I'm not grimacing or moaning that I'm faking. God, I wake up every morning wondering if I can keep pulling it off...

Cheers

My worse symptom is headaches, and to be honest, it is very difficult to hide a bad headache, usually your eyes say it all.Otherwise, I rarely mention my neuropathy, unless something happens out of my control, like balance, and such. I work in an office were nearly everyone is over 50 now, so everyone has aches and pains all the time, works for us all!

My neuro found me here in Neurotalk, realizing I had wanted an appt with him and had to settle for someone else. He emailed the site, asking if they would email me and give me his email addy. I was very impressed, to say the least. He is a very busy doctor, often times taking 6 months to get an appt with him, yet, that first time, I was seen in less than 2 months, and he has been my doctor since then. He does read here, which I think is wonderful. This is probably the best place for a doctor to actually hear and understand what we all go through.

Thank you Dr. Gudesplatt.

I can really relate to this,. I try to focus on the people in my life who do support and are understanding but it is still hard to accept the ones who are clueless. I developed this young at 28 so people see me as young and should be able to do. I'm very lucky to have a mom who has supported me through thick and thin. My grandfather on the other hand blames me for not getting better and for getting this condition. His gf yelled at me for not going to yoga. I said I can't get on the floor she is like well you just don't want to get better. What an idiot. That is why I go to so many docs and put myself through treatments. As for the docs I think some regardless of what you look like they would not care. It is hard to not give up in finding the right care. Truly I went to so many docs and many opinions to have met so many insensitive and clueless docs. I went to the best hospitals to be let down. Thank goodness for my mom who pushed me to keep going cause I finally found a random doc but who ended up being the best in the bunch and actually listened and spent time. Also I am thankful for the boards and people I have met. I can still remember coming to this board at the start feeling so scared and clueless and how supported and I felt by people and how much informtive direction I was given. Many better thoughts for all

Yes . . . everyone who proposes that they, or someone they know, has found the cure! I am sick to death of hearing about this cure or that for my nerve pain, my Crohn's, etc. It is as if they don't quite believe that I am and have tried EVERYTHING available to me.

And yes, ten minutes for those who propose that I can have a full and active life by ignoring the pain! Fifteen for those who claim that I brought this about by bad lifestyle choices.

Whew! Now I feel a little better . . .

Lefthanded you are so right about people suggesting treatments. I had a person in my life say I should do a treatment and then in the next sentence say wait what do you have? Or when I say I have a condition people respond with someone they know has something or they do. Sorry for my rant this post hit home with things I am facing right now.