To tell or not to tell?

[White Falcon]

Hi everyone,

My husband has invited some friends for a BBQ in a few weeks time. This will be the first time I have socialized with anyone, other than immediate family, in three years. I can't sit at all, and standing is limited. I use a zero-gravity recliner a lot (like right now). I can already hear our guests' sympathetic questions and remarks about back pain. I am tired of people wanting details about my condition, and assuming it's back pain, and that they know all about it, 'cause they have back pain, too....

We have invited two couples, who are high school buddies of my husband's, so he has known them for 40 years, and I have known them for 28 years. We had lost touch and haven't actually seen them for about 10 years, so they don't know what my situation is.

My question is this: should I tell people what my actual problem is? or just leave it as "back pain"? I would like to hear how others handle this sort of thing. What kind of responses have you had from people? What's the consensus: to tell or not to tell? That's the question

[Violet M]

That is such a tough question to answer. As much as I want people to really understand what I'm going through I've discovered that I usually feel worse after telling them the actual story because they have no concept of it and they don't really want to know. But I don't know what your friends are like -- they may be different from mine. After 10 years of this I've learned that at least for me, I feel better if I just let people think it's back pain and then use this forum/website as an outlet to educate people.

I hope that you have a nice visit with your friends and that they will be understanding - whatever you decide.

Violet

[janetm2]

I would say whatever you feel most comfortable doing. I have struggled some with this, my boss wanted to protect me by saying back pain butt I go with the possibly too much information and explain that it is pudendal nerve entrapment, pudendal is the pelvic nerve and I had pelvic nerve decompression surgery. It is rare in that not many medical let alone regular people have heard of it and only 7-9 surgeons in the U.S. For me the two main ligaments were squashing the nerve. I may not say all of that but decided people need to start knowing about it. Affects bending, lifting, twisting, sitting is painful, and to be limited and with me having chronic foot as most folks who knw me are aware I cannot stand long which leaves laying down. I have told this to co-workers including guys. Still not everyone still gets it and they go revert to "back pain" but I am hoping some do. It is a start. It is up to you and I guess the warning at the end may make it not worth the trouble but it really depends on your audience as to how well they are paying attention and can grasp this "new" condition. I hope you can enjoy the company from the chair and if you explain they get it! I have passed the website to some friends and family and that did seem to convey better the extent of our plight.
Janet

[Laura]

Hi White Falcon,

I think you've answered your own question. If you say it's your back, people will be giving you all kinds of advice about what they've done to fix their backs, and will be telling you what you should do. Who needs it?!?
You have nothing to be ashamed of!!! Tell them a nerve in your pelvis is acting up. That's what I always say, and I have never had one person ask for more information or make any kind of comments as to what to do about it. Heck, even most doctors don't know what to do about it, or for that matter have ever even heard about it. People usually only like to talk about what they know about, or what they can relate to. Don't worry about it, just have a good time!

[helenlegs 11]

It used to irritate the hell out of me when people say 'how is your back?', I say 'it's fine', which it is 'but I have nerves trapped in my pelvis'. They make an 'oooo' concerned face and that's usually it, thankfully. Probably as White Falcon says, they don't or can't identify with that, and there are only a certain few I am going to discuss my bottom with, so end of. . . . . and the party begins, have a lovely time.

[DoubleEdgedSword]

If you're not comfortable telling folks what the problem is because you don't think they'll understand or will ask too many questions (and still might not "get it" afterwards), then don't tell them. Your privacy is something you can't "get back" once you let go of it. If you're not particularly close with these people then is there really a point to giving up your privacy?

I'm in the same boat on one hand.. I have PGAD, which is really sensitive to deal with. Aside from a couple of my closest girlfriends, my hubby & my doctor, I haven't told anyone about it, not even my family.. I'm not ashamed of it per se, because I didn't choose it, it chose me. There may come a time when I'll need to let them know about it, but for now, it's on a "need to know" basis, and since I don't think they need to know at this moment, I choose to protect my privacy.

I'm the only female left in my immediate family, so telling my Dad & my brothers who are geographically distant from me seems a bit pointless. It's life-altering, not life-threatening, so unless I have to go into hospital for treatments, or we run into something my hubby can't handle, I'm quite okay with them not knowing about it..

I hope you'll be able to enjoy your company and keep your privacy if that's what you choose to do.. Good luck!

[merrie]

I usually go with the simple " I have a nerve entrapped in my pelvis - which causes me widespread neuropathic pain - and makes it impossible for me to sit comfortably." I agree saying back pain elicits unwanted war stories from people about back treatments (which drives me insane).

Hope you feel ok when your company is over and you can have a good time.

Merrie

[White Falcon]

Thanks everybody for your replies. I prefer the term pelvic pain. That's a good idea. I didn't really want to say vagina at the dinner table!

I did actually injure my lower back about 15 years ago, and it was nothing compared to what I am dealing with now. Even though the sacral pain prevented me from sitting or working, it only lasted a few months, and I was able to get treatment for it. There was nothing embarrassing about it, everyone could understand and sympathize, it didn't affect what clothing I could wear, and it just didn't have the whole emotional baggage associated with genital pain. I would take the back pain I had over my pudendal pain any time!

[Julia]

This is definitely a personal decision. For me, what I am willing to tell people varies day by day. Most often I say that I have chronic pain due to a trapped nerve in my pelvis. I let them know that day to day tasks are difficult, working almost impossible, that there is no "cure" but that I am choosing to remain positive and hopeful. That way, it does not turn into a "poor me" conversation. I reserve the "poor me" conversations for close friends and family. However, if people have genuine questions, I am usually happy for the opportunity to educate them on what PNE is and how truly devestating it is - sometimes it feels good to be able to reveal my whole self since I so often have to "grin and bear it" and pretend that I'm just a normal girl.