I didn’t dig out my old Emily Post etiquette book this morning, and frankly I don’t know that she would have an answer to this question. But one reader sent me a very sweet email this week and she seemed both frustrated and hurt. I thought I would share.

Samantha (not her real name…I thought I would protect her identity since we do live in this virtual world!) has been living with Epilepsy for most of her life. She began having seizures after a car accident when she was 7. She’s in her mid-30′s now, and she’s been going through some things: stays in a hospital Epilepsy Monitoring Unit (EMU) so that doctors can collect more data on her seizures and to see if she is a candidate for surgery. She also had a small surgical procedure which had something to do with her Epilepsy. She has taken some time, here and there, off of work, always following the rules and always keeping her employer informed of what she’s been up to in terms of her medical situation.

Samantha tells me that she’s finding that people she’s friendly with at work who are just finding out about her Epilepsy have now begun to ignore her. She was somewhat shocked that when she returned home from a 3-day hospital stay…her answering machine was empty. NO calls. When she returned to work, no one asked her anything about her illness, hospital stay, prognosis for surgery, etc. She has a few close friends and family who are in her support network, but she said for the most part, the people she interacts with each day at the office have shut her out.

So why won’t people talk about Epilepsy? Once they hear about the diagnosis, if they find out you might be on course for a major brain surgery…why do they all of a sudden tune you out? I always feel like people are very willing to talk about cancer. Don’t get me wrong, I have dear friends dealing with cancer now and I continue to keep tabs on their progress and remain as in-touch as I can.

I have a very dear friend…she and I have been friends for literally half of my life. And she simply does not want to talk about my illness. Period, The End. I’ve been challenged about this point by my mother, my husband, one or two other dear friends…but this particular friend would raise my daughter for me if I needed her to…but she is frankly not one to delve into the ins and outs of my disease. I’m not sure if it’s because she would rather remember me for the person I was before I got sick…but either way, she bestows her friendship and love upon me in a certain way–she doesn’t ask me ‘how are you feeling?’ each time we speak, and I’ve grown used to that.

Some ways we might get people to recognize Epilepsy, if we need them to:

-If you are in an office setting and you are returning to work…post a very clean, neat 8.5×11 sheet in your cube or office detailing ‘What is Epilepsy’. That way, it’s a conversation starter!

-When and if people do ask you, ’how are you feeling?’…try to remain as positive as you can. Briefly explain what’s been going on and ask them if they have any questions for you!

-If they do ask…give them some great websites to check out. Let them learn more about Epilepsy on their own.   http://epilepsyfoundation.org/, http://www.cureepilepsy.org/home.asp

Good luck…remember, the more we do talk, the more attention Epilepsy gets!