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I don't want my friends and family to be hurt or upset that they weren't aware of the situation but at the same time it might never be necessary to tell them at all. (samcaplat/flickr)

Welcome Meddleheads, to the column where your crazy meets my crazy! Please send your questions to advice@wbur.org. Right now. Not only will you immediately feel much better, you’ll also get some advice.
Hugs,
Steve

PHOTO

Dear Steve,

I was diagnosed with endometrial cancer (cancer of the uterine lining) almost two years ago. I kept everything under wraps and told only a very few people. I didn’t want to be defined by the diagnosis and have a horror of pity. I didn’t lie to anyone but I was pretty vague about some things in order to maintain my privacy. I chose not to pursue chemo or other conventional treatments and until about six months ago didn’t take any medication at all. Things are heating up and while I am confident of a positive outcome, I wonder at what point I should clue people in to my situation. When I say that only a tiny number of people know, I mean, like, 10, including my husband and immediate family. I am still not doing chemo or anything so there are no outward signs of illness.

I don’t want my friends and family to be hurt or upset that they weren’t aware of the situation but at the same time it might never be necessary to tell them at all. I am really torn and I feel like I have backed myself into a corner though I can’t imagine having done it any differently. I should mention that while my husband and the people who do know respected my wishes and have been very protective of me, they didn’t all agree with my decision to keep it to myself in the first place.

I didn’t want to be defined by the diagnosis and have a horror of pity.

What is the best way to proceed? Continue as I am for a bit until I see what happens or start to clue people in? I own a small store and I worry about customers hearing about it and thinking that the store may close or being cornered with personal conversations while at work. I am afraid if I tell anyone it will be common knowledge in no time and that freaks me out.

My instinct is to just keep on as I am but I am afraid I am not totally clear mentally on the subject and I really don’t want anyone to be upset. I’m not sure how I would feel were the situation reversed which is usually how I resolve these dilemmas.

I would appreciate your point of view on the subject.

Signed,
Keeping Mum

Dear Keeping Mum,

You’re not a big fan of pity, so I’ll try to avoid platitudes. This is your illness and I can understand why you don’t want it to become community property, something that makes you That Poor Lady with Cancer. You’re absolutely right that some people are going to see you differently if they know you have cancer and get self-consciously pitying or solicitous around you. These people — and I’m one of them, so I should say “us people” — mean well. But cancer freaks us out. It’s this Sword of Damocles that hangs over all of us and when we find out someone has it our own fears and guilt go into overdrive. And thus we tend to direct various histrionic forms of sympathy toward That Poor Lady with Cancer. This only amplifies her sense that she is living outside the smug circle of the healthy. Thus the illness, which is already attacking your body, becomes a source of stigma as well. It sucks.

You don’t owe anyone a medical status report, especially if you sense that providing one is going to sap your energy, or try your patience.

So the short answer is: you should only tell the people you want to tell. You are the one with cancer. It is your business and the business of those you entrust to support you at this time. Period. You don’t owe anyone a medical status report, especially if you sense that providing one is going to sap your energy, or try your patience. I’ve spent enough time around people with cancer to know that their energies are better spent on matters more pressing than social niceties.

All that being said, the fact that things are “heating up” clearly has you mulling the situation. I’m not sure what “heating up” means, exactly, but it sounds like a code phrase for the unwelcome possibility that the effects of your disease may soon become more apparent to the world at large. You will then be left having to explain to certain people why you didn’t tell them sooner. They will be upset, or feel betrayed.

Here’s what I have to say about that: tough luck for them. To reiterate: you are the one with the life-threatening disease. This doesn’t mean you get to treat people like garbage. But it does mean that you can let yourself off the hook for misdemeanors, particularly ones committed on behalf of your own wellness. If it comes down to it, you can simply tell people what you’ve told me: that you didn’t want to be defined by your condition, or pitied, or stigmatized.

But I do want to introduce two other ideas worth thinking about. First, part of your reluctance to tell folks is about protecting yourself. Protecting both your peace of mind and your own identity. It’s clear that you’re a known figure in your community and interacting with people who don’t know you’re sick must provide a great deal of comfort. It’s a way of keeping the secret from yourself, if you know what I mean. Or maybe it would be more accurate to say that by keeping news of the disease under wraps you’re both limiting its “spread” and preserving the psychic possibility that it will simply go away.

In this sense, it may be significant that you’ve opted against conventional treatments, such as chemo and surgery — which is the most common course for endometrial cancer. As you yourself noted, forgoing these procedures has been one way that you’ve been able to conceal the cancer — from public view, and perhaps from yourself. But I hope that your reluctance to tell people isn’t symptomatic of an avoidance that could, in any way, deny or delay the treatment necessary to get you healthy again. I’m going to trust that those who do know about your cancer wouldn’t allow this. If you aren’t already, please consider talking with a therapist who can help you clarify your feelings about all this.

About the only good that can come out of a diagnosis like yours — aside from a full recovery — is the chance to see anew the splendor of your life, the many people who love and admire you and wish to be able to express those emotions as you face this challenge.

One final notion to think about. You talk about having a “horror of pity” which I completely get. Powerful, independent people tend to abhor pity because it’s condescending; it represents a posture of assumed vulnerability. And none of us like feeling vulnerable, especially when our bodies are under siege.

But here’s the ultimate truth, Mum. We are all vulnerable. The saddest part of the human arrangement is that disease and decay and finally death comes for all of us. And when it does, the biggest loss of all is that we don’t get to love anymore. So by all means avoid the leering pity of the masses. But please (please please) don’t shut out those who have genuine sympathy and love to bestow onto you. Don’t deprive yourself of the support you need in these coming months and years. About the only good that can come out of a diagnosis like yours — aside from a full recovery — is the chance to see anew the splendor of your life, the many people who love and admire you and wish to be able to express those emotions as you face this challenge. Letting them love you is a huge act of vulnerability. But it’s also the whole point of being alive.

Wishing you every good thing,
Steve

Okay folks, now it’s your turn. Did I get it right, or muck it up? Let me know in the comments section. And please do send your own question along, the more detailed the better. Even if I don’t have a helpful response, chances are someone in the comments section will. Send your dilemmas via email.

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  • Deb

    Please consider your partner in this too. He may need support and may need to tell people so that they can support him. When my father had a heart attack, he didn’t want to tell anyone for very similar reasons. However, my mother really needed the support from family and friends. It is about you, but not only about you.

  • susan tepper

    I’m so sorry for you. Many of my friends have cancer. I think it’s a totally personal decision. I don’t know what I would do if faced with this. I wish you all the best that is out there.

  • GMM

    Having been in your situation in a fairly public position, well known in a company with a lot of exposure to people I would like to ask you how much of this is about allowing you to deny your situation to yourself – to pretend you are not sick? I didn’t want to deal with people asking so I told my closest friends and asked them to let other people know about it with the caveat that I didn’t want to discuss it. It made it much easier on me and I didn’t have to feel as if I was concealing anything and I didn’t have to have those conversations you are dreading. I found that when I did discuss it the vast majority of people did not pity me but had empathy and a wish to help if I needed it.

  • Chelsia A. Rice

    Oh, Steve. You nailed it in the last paragraph.

    I was never reluctant to tell others about my cancer; I shared the entire process from symptom to surgery. When I came out and allowed the people that love me to undertake the journey along side me, it revolutionized my capacity for love. Strangers stepped up–not with pity–but with concrete support, such as donations and food and errands. They fucking danced for me when I was scared about my tests, about my surgery, and every time I went into my chemo treatments. Those people’s loved carried me through the absolute scariest of tunnels I’ve been in.

    Yes, being outside the circle of healthy is hard, but more, having people tell you what to do with your body while you undergo your chosen treatment is even harder. There are a million people who think they have the answer (herbs, supplements, juicing, mangosteen, and human placentas, even), and that would be the one thing that I’d add to your adice, that Mum should know should she decide to come out with her disease. It’s important that she immediately make her mark her boundaries and say “This is how I am going about treating my cancer. Please withhold your treatment suggestions and support my decisions.” That’s all we can do as people who love others with this crazy, complex disease. Having been both on the inside and outside, this is a rather hard answer to accept and deliver. All we can do is love our fighters as hard as possible through the hardship, and support them no matter what.

    Glad this came through to you. Thank you for your considerate answer.

  • gossipy

    Your health is your business. But to forgo treatment? Isn’t that rather selfish? You sound as though you want to go down a hero. What about your family? You need to rethink this.

  • Fozziebear

    An excellent, touching response. I couldn’t agree more.

  • Scott

    Consider the approach of a prominent person with cancer. Google the following: “Dana Cowin cancer” She made a choice that worked for her. Maybe it will help others working through these choices.

  • Em

    Certain cancers including endometrial (depending on the type) can be hereditary. If I was an at risk family member and you kept it to yourself, I would be pretty unhappy with your decision. You are then making potential life and death decisions for others.

  • Judy

    Steve, you gave an wonderful answer particularly in the last paragraph, Thank you for your kindheartedness and empathy. I too am a survivor of endometrial cancer and I also ovarian cancer at the same time. I just celebrated my 15th anniversary of being cancer free. I too had/have a prominent position in my work community. At first I wanted to hide and not generate any pity for myself but I opted for the most aggressive treatment that I could receive and that meant surgery, chemo and radiation. There was no way to hide the temporary and permanent changes to my body.

    The hardest part of all of it (besides the pains of treatment and worrying about dying) was having to learn to open up to all of the love and caring that came to me endlessly no matter what state I was in. Unfortunately, my treatment while curing my cancer brought other medical complications that lasted for a decade. Everyone continued to be there to support me year after year with all of my needs and dependencies.

    I”m happily healthy once again. The biggest healing was to my heart which was cracked open and enlarged by all the love that people known and unknown endlessly showered upon me. I will be forever grateful for the opportunity to heal my heart which until that point, I didn’t even realize was broken.

    One last thought. It never occurred to me that people would see me as heroic. If there was any pity generated, I never heard it or saw it. It changed the whole way I viewed myself. You just never know what’s going to happen if you take the risk to trust people. And while it’s true that some people will pity you, they clearly don’t know you. At the very least, stepping up and admitting your vulnerability and need is inspiring. Most people will thank you and love you all the more for providing an authentic voice that they can trust. Ironically, my business actually increased due to that very reason!

    Best of luck to you!

  • twm

    I believe your closest friends and relatives have a right to know because they love you so much. I have been the victim of not knowing so I think you should tell your closest family. But everyone else — totally your choice. i think I would also try to control who knows and if it happens to me.

  • Roseanne

    Steve, you got it right. If we do not want to be defined by our gender, race, religion, sexual orientation, etc., why then by our disease? Mum, I wish you well.

  • Lea

    I think this was a very good response. I’ve had cancer twice. The first time I told everyone I knew and strangers on the street; the second I only told family, close friends and people whose experience of me would be affected by my treatment. Keeping quieter the second time was only because I wasn’t as afraid and didn’t need as much support (it was clearly treatable and I knew what was going to happen to me) — not because I was afraid that people would “pity” me. When I hear about fear of being pitied it sends up a big red flag for me — I think it says more about the person who fears it than it does about the reality of how people deal with hearing about misfortune. People react with such warmth and compassion when they hear about your cancer. Steve is right on that you miss a wonderful chance to experience the best side of humanity when you need it most. And when you are a person with a role to play in a community, you also miss a chance to be the role model to others in how you handle it, with, for example, courage or humor or positivity (or all of those things). So, keeping quiet or telling the world, both are fine options, but the reasons for keeping quiet given here seem like they could stand some self-examination.

  • rs986

    I’ve been thinking about this all week. Suggest listening to this

    http://www.upworthy.com/a-4-year-old-girl-asked-a-lesbian-if-shes-a-boy-she-responded-the-awesomest-way-possible?g=2&c=ufb1

    and thinking of the question in terms of the person being locked in a closet. And closets are hard, and secrets are damaging, and stressful, and who needs damage and stress during cancer? “If you want to be real with someone, be prepared for real love.”

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