Whom do you tell? And how? And when? And why?

Having an incurable rare disease that affects your energy levels and desire/ability to socialize inevitably leads to questions about whether to level with people about the fact that your life has changed.

Most of us with ET don't consider ourselves terminally ill. But if you've told people you are sick and have used the word "cancer" to explain your disease, some of the responses from people in the article,  "How To tell Someone You're Terminally Ill," from the New York Times Magazine will sound familiar. 

Interestingly, that same NYT magazine issue has a question in The Ethicist's column from a woman troubled by a promise she made to her sister, who was dying of breast cancer, that she would not reveal the news to their elderly mother. (Scroll past the question about the adopted sister to see the cancer question.) 

Here's my riff on the issues raised about whom to tell what to and when in these two articles as they pertain to those of use with chronic, incurable cancers like ET:

The case for keeping your mouth shut. There are practical reasons for keeping a chronic illness a deep, dark secret. For instance, if you're over 50, your chances of getting axed in the next round of layoffs at your place of employment are likely high because you're at the top end of the wage scale and are entering a higher-risk insurance category. In these cases, you might as well just lay your head down on the chopping block as reveal an illness to your employer. 

Another practical reason to keep your mouth shut is to spare yourself the indifference and unsolicited advice you'll get from casual acquaintances. Getting a "Hey, bummer. Get well soon!" can be hard to take if you're having a bad day. Or you could get a lot of suggestions about everything from dietary changes to a trip to an expensive clinic your insurance won't pay for. If you don't want to get embroiled in these conversations, and somebody's idly wondering where you've been keeping yourself, tell them your age is catching up with you and you'll get together soon.

Finally, sparing elderly relatives from unnecessary worry may be another practical consideration. My mother has a variety of health problems, and I'm the first person she calls when she has a medical crisis. She has no idea I'm sick, and I'll keep it that way as long as I can. There's nothing she can do but worry, and if that worsens her medical condition, that's just more on my plate.

The case for blabbing. On the other hand, you probably should tell your spouse and adult children who have medical power of attorney (and I recommend making sure your POA and advance directives are up-to-date as soon after your diagnosis as possible) about your disease. Besides my husband and son, a close friend and my brother also have copies of these documents. In the event of a serious health crisis--ET patients are at higher risk than for clots and bleeding episodes--it's good to have more than one advocate. As someone whose worst nightmare is losing the ability to speak for myself, I say you can't have too many mouthpieces!

You may also want to tell close friends and relatives if you think they're caring and understanding people. I'd recommend that you let the news come out naturally in conversation. I'm a blabber mouth, and in a few cases, I told people out of the blue. Bad idea because most were either unnecessarily alarmed ... or turned out not to care as much as I thought they did.

If you're really stressed about your ET, it's going to be hard finding a support group because there are so few people with MPNs. I live in a town of 1,700 people, and chances are that I'm the only person in the village limits who has ET. So talking to a counselor might be a good idea, but I realize that's glib advice given that mental health care is still not as easily accessible and affordable here in the U.S. Finding people to talk to seems to be one of the hardest things for ET patients and others with rare diseases.

Bottom line: Think carefully about whom you want to tell and why. Come up with polite responses to divert those who might press or pester for details you don't want to discuss. If you want to maintain a sense of normality, you have to walk the line between appearing overly furtive or secretive ... or creating drama with too much info.

Remember, you're always welcome to blab here and on this blog's Facebook page, where everybody's in the same boat and understands your fears and worries. (Link to the FB page is in the links list at right.)

Be well!

Related: Writer explores "the pressure to say you're OK"

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