Do you tell people about your AN

[Raven]

 It seems I don't tell anybody who doesn't know about it anymore. I did however have a lenghty conversation with a women I held a door opened for at the mall, she had a cochlear implant..........first one I had seen out in public.

Anyway, just wondering how many of you tell new people you meet about your AN.

John

[GM]

I normally don't...but when I do, I usually refer to it as a "non-cancerous tumor on a hearing nerve." 

[lori67]

I guess for me it depends on the situation.  If I'm having an actual conversation with someone, I will probably tell them if it happens to work it's way into the conversation.  If I'm just talking to someone in passing, probably not.

I guess I just think people should know that you can go through something like brain surgery and still be okay afterwards.  Most people probably don't expect a person who's had his/her head cut open just recently to be out doing things everyone else does - like grocery shopping, playing with your kids, working...  Who knows - maybe I'm just proud of myself!   

Lori

[Dfcman]

I don't really ,but I tell those who are close to me.  Like dear friends that have gotten to know me in the past 2 years(roommates etc)  I have a surgical scar from my 12/7 procedure so I have to do kind of one of those once upon a time deals.

Chris

[Jim Scott]

John:

Like many here, everyone in my family and social circle know all about my AN.  At more than two years out from my surgery/radiation it's old news and hardly ever comes up in conversation anymore.  I'm good with that.

With new acquaintances, I may mention it if it's relevant but if not, I don't.  Sometimes my wife will mention it to a women she meets at some function and at a later date, if we all meet for some reason, the woman or her husband may ask me about my brain surgery.  If this happens, I keep the explanation concise, having learned from experience that if you go into too much detail, people's eyes begin to glaze over and they try to change the subject.  Besides, if you didn't know it, you would never guess I had brain surgery - and many people I meet don't.  Thats fine with me.  I really don't want to be known as 'The Guy Who Had Brain Surgery'.  I mean, people might get the wrong idea...like I'm mentally impaired or terminally ill.  Actually, I'm fine. 

Jim

[Tumbleweed]

At this point, I've only told extended family, very close friends and a very few trusted business associates (people who had to know once I scheduled treatment, because I work with them). And I've given my blessings to my wife to tell her closest friends, so she has a support network. All told, about 20 people know about it.

One of the reasons I've limited the number of people I've told about my condition is that I don't want to be looked at as the guy with the brain tumor. I'm planning on beating this thing. I want my old life back, as much of it as I can have. Constantly being reminded about it ("hi, how are you feeling? What's next for you? When is your next MRI? Yadda yadda yadda...") is not what I want for myself. A lot of times when I get together with friends who know about my AN, I answer their questions very briefly and let them know in subtle ways that it's not something I want to talk about. I want to assure them I'm okay, but then it's time to enjoy our reason for getting together. If and when I need support (usually in the form of information and perspective from people who have gone through what I'm going through), I usually turn to this board. No one else gets it like other people with ANs.

The other reason I don't talk about it with other people is that it could hurt my career or limit my work opportunities (for reasons that I can't go into).

Once you tell someone about your AN, the cat is out of the bag. Having support from family and a carefully chosen group of trusted friends is important. People who depend on you to do your job might also need to know about your condition (with as many or as few details as you choose to give them; most people will respect your privacy if you make it clear you don't wish to divulge everything). But beyond what's necessary for taking care of your needs, you might want to think carefully about who you talk about this with. That threshold is different for everyone. But it's still an important consideration.

Best wishes,
Tumbleweed

[leapyrtwins]

Like Lori said, it depends on the situation.  I find it also depends on the person/people I'm interacting with.  Despite the fact that I wear a BAHA, there are still times when I have to tell people that I'm SSD.  Telling them usually brings up questions, which generally leads to me revealing that I've had brain surgery - not that there's anything wrong with that.

Also, like Lori said, I think it's important for others to know that you can have brain surgery and be just fine - live a good life, etc.  I often take the time, when warranted, to educate people about my BAHA.  There are lots of SSD people (AN patients and others) who have no idea the BAHA exists and would be a good option for them or their friends, relatives, or acquaintances.  I feel it's up to me to share my experience in the hopes that it might help someone else.

But, do I wear a sign that says "I had an AN" or "I had brain surgery"?  No.

Jan

[wendysig]

Most of my family  and friends knew about my AN and surgery.  Thanks to my youngest daughter, most of my neighbors know too but I don't generally talk about it to most casual acquaintences.  I have had reason to mention being SSD and that sometimes leads to a conversation about my AN and surgery but I don't advertise it.

Wendy

[Kaybo]

John~
Since I have permanent facial paralysis, it probably comes up more for me than others.  I get a LOT of stares, and if the situation warrants it or if I am chatting with someone new and I can tell they are REALLY wondering, I bring it up so their tension is eased.  I am so far out and lead a very active life (even with many limitations) that I don't ever worry about being the poor, pitiful girl that had brain surgery.  Heck, let's face it...we've been thru a LOT - we should milk it for all it is worth!!     Just kidding...kind of...

K

[Debbi]

I'm in somewhat the same camp as Kay (although I've been assured that my paralysis is temporary).  People can look at me and see that something is "amiss" so I figure I might as well just tell them.  I also agree with Lori that sometimes there is value in having people know that you can have brain surgery and be quite functional a few months later.  If my face wasn't droopy, in fact, no one would know I've had brain surgery.

The response I've gotten from people has been incredibly supportive, by the way.  I personally don't feel that this is anything I need to hide - that's just my own approach to life, and each person needs to decide for themselves how much they want people to know about this.

Debbi

[Kaybo]

Debbi~
I have never received ANYTHING but support, encouragement, and I hate to say, awe...

K

[jazzfunkanne]

Hi I only told close family and close friends, i think i dont want people feeling sorry for me, or think of me any different to what i was before, maybe in time i will talk more about it.

[Tumbleweed]

My mother-in-law had to know, of course, but she responded by inundating me with misinformed opinions on how I could get better, newspaper clippings about brain injuries, etc. My point is that it's always a good idea to think about who you want to share this information with and what kind of attention you're going to attract. The right kind of support is essential. The rest is tiresome.

Putting it bluntly, that is...

Best wishes,
Tumbleweed

[Raven]

Kaybo,

I milk it all the time, however it is just with my wife, I had a sore ankle a few weeks ago and I told her the AN caused it...........LOL.

My friends and family are always aking me how I'm feeling, so I tell them how I'm feeling. People that are unaware of my condition are on a "need to know" basis...............and most all of them don't need to know.

John

[AMD]

Raven,

So far, besides friends and family, I have only told a few people at work about my AN.  I still have some time before my surgery, so I plan to space the telling out.  That way, I'm not bombarded with questions, of "how are you feeling??", and "if there is anything i can do...".  Don't get me wrong, EVERYBODY has been very patient, supportive, caring, and generous.  I am lucky to have that.  But, like some of the others said..... I feel like all I think about is the AN.  Almost like I have a neon sign over my head blinking "Brain Tumor" all day.    I have not been telling "new" people.  Because, sometimes it's nice to talk to people that have no idea and I know they are not thinking...tumor, tumor, tumor, in the back of their minds when looking at me.  Also,  when I am asked how my week's been, i just reply with "crazy as usual".  Most people don't think twice, and then I don't feel like I am lying to everyone.

Amy