Thursday, February 27, 2014

What NOT To Say To A Person Experiencing A Health Crisis

Well readers, are you tired of me making a big deal about writing 7 posts in 7 days?  Sorry.

4 down 3 to go!  Go check out the other participants, there is so much great stuff out there...my feedly is bursting.

This post is brought to you by the number -10 which is what the wind chill was when I decided we were not driving to Occupational Therapy and coming home to work on this post instead.

This post is also brought to you by the letter K because one Mrs. Kendra Tierney at Catholic All Year has requested that I write a post about what NOT to say to someone with cancer.  I have a lot of thoughts about this, but I've held back a bit from sharing them because if you are a dear soul who has said one of these things to me I do not want to hurt your feelings because I just don't.  The thing about someone having cancer, or a miscarriage, or an accident, or some other health crisis is that first and foremost our human impulse is to DO something or SAY something, and that is a beautiful thing.  Almost everything I'm about to share is not offensive or even really wrong, it's just something that can be handled better when you have a clearer perspective.  So, if you read something here and are like "OMG I think that was ME, I think I said that!", let me put your mind at ease--I don't remember isolated incidents or even think people who say these things are anything other than kind loving people who mean well.  Some of these are things I've said to others myself.  Kendra asked in reference to talking to someone with cancer, but these really apply to anyone facing their own health crisis or the health crisis of a loved one.

The following list is in no particular order.  Please remember that different people respond to a health crisis like cancer differently, so this is from my individual perspective as a former(woohoo!) pregnant cancer patient.  Based on my experience you should NOT say:


1.  I Can't Imagine

You're right, you cannot imagine what this is like if you have not been through it and you know what?  I don't want you to.  Facing something like cancer treatment during a pregnancy, or cancer in a loved one, or whatever is so much worse than anything you can imagine but it is simultaneously not nearly as bad as it seems in a way that I can't explain.   There are also so many blessings that you also will not be able to conjure up when you play make believe about what this is like.  If you find yourself trying to imagine, or feeling like you should being trying to imagine please do us all a favor and stop.  Spend your time being grateful for your own health and healthy loved ones, do something for your family, stop yourself from complaining about something in your life that is small in the scheme of things, in short--be productive.  Be glad you are not in this situation and do something with that gratitude.  Please also ask yourself, how do you expect the sick person or sick person's family member to respond?  Think it through...because in polite society conversations are a two way street and when you say something like that the burden is now on the sick person to say something...but what can they really say?  Not much.  In fact, the burden is essentially now on the person facing the crisis to comfort you.  Now, that is something I realize has to do with how I'm wired.  When you say "I can't imagine" I hear it as "This is upsetting" and when someone is upset I want to comfort them.  But really, that's messed up.  The sick person should not really be doing the comforting.  So, really, stop trying to imagine and just be grateful it's not you and then do something productive with your gratitude.



2.  How Are You?

I know.  I know.  What else can you say?  Not that.  This goes back to that thought exercise where you ask yourself "How is this person supposed to respond"?  Whether or not you should say this probably varies with how close you are to the person in question.  If you are very close, it might be ok.  Everyone needs someone or a few someones that they can really confide in about their difficulties.  But if you are just acquaintances or just aren't sure?  Don't ask.  In polite society this question is a formality/nicety that is part of the social contract.  Part of that contract is that we understand that most of the time we don't really expect a person to answer honestly.  I know this one might cause a lot of upset but really, everyone knows someone who always answers with way too much information to this question and most of us strive to not be that person.  Furthermore, you likely have a good guess how we're doing...if we're going through chemo or nursing a family member through some kind of difficult treatment the short answer is "not great".  Because we know you know this, we now have to say the polite thing that is a lie, or we have to tell you stuff that feels like oversharing. You can probably guess pretty well how we feel even if you are following my advice and not trying to imagine.  It's not a secret that cancer treatment sucks.  What you're really trying to express when you ask "How are you?" is "I'm thinking of you" or "I care about you" or "I hope you're doing alright".  In fact the best thing to say "I hope things are going OK" or something along those lines.  That's what you really mean and it puts us in control of how much we share.  We can just respond with "thanks" or elaborate on what's going on with us if it seems right at the time.


3.  Why Didn't You Tell Me/Update Me/Call Me Back

Because I'm dealing with cancer and you're not.  Seriously.  Because something like cancer is all consuming and people want you to repeat the story over and over and over and over and it is exhausting.  I started this blog to help me process what I was/am going through but also so I could cut down on how many times Michael and I had to repeat our story.  I know you might feel left out and want to know the details, but the sick person or their caregiver is absolutely mired in the details and if they are trying to have a positive attitude they have to focus on that and not on repeating the litany of crap they can't escape.  Please cut the people who are ACTUALLY IN THE MIDDLE OF THE CRISIS SOME SLACK.*

*This is a good time to direct you to this excellent article about Ring Theory.  The only quibble I have with it is that I feel the the patient's spouse or direct caregiver should be in the center ring with the patient.


4a.  Are You Going To Try (Insert Alternative Therapy Here) Because Big Pharma Doesn't Want You To Know About It

and it's ugly stepchild:

4b.  This Probably Happened Because You Vaccinate/Eat Meat/Use That Shampoo/Talk On A Cell Phone/Live By Powerlines/Brush Your Teeth etc.

If I accomplish nothing else with this post it is my fervent prayer that:

Pardon Tina's french, but seriously?  Seriously.
Let me be clear.  Statements 4a and 4b are always WILDLY OFFENSIVE.

Before I go any further I'd better out myself to everyone who believes in the secret cabal of Science and Medical Types conspiring to KILL ALL THE PEOPLE that I am a paid shill for the pharmaceutical industry.  That's right.  They pay my bills and feed my children.  You see, my husband is a Medicinal Chemist for a pharmaceutical company that develops cancer drugs.  When you tell me that there is a miracle cure out there that the Evil Pharmaceutical Industry doesn't want me to know about you are defaming my husband and his coworkers.  So thank you helpful person with an internet connection you have put me in the position of defending my treatment plan and my spouse.  I'm a big girl so I'll deal with it, but the person I'm really concerned about is the person who is scared and overwhelmed and doesn't know you're full of bologna.  That person is going through one of the most terrifying, draining experiences of their lives and they are making decisions that are so so difficult.  They do not need you coming over and stirring the pot of confusion because a sidebar ad on your facebook feed sold you a book about Acai berries or whatever dragon fruit nonsense it is they are peddling out of the goodness of their hearts. You are not a doctor, you are not a scientist, you are not their doctor so ZIP IT.  Unless they explicitly ask your opinion and/or for your suggestions their treatment or the treatment their loved one is receiving is none of your business.  

The same goes for hypothesizing right to the patient or caregiver's face about what could have caused their suffering.  This is even more cruel than questioning their treatment.  What good can come from suggesting they have caused their illness or that it could have been prevented had they been as informed as you are?  In the cases where it could have been prevented you are a day late and a dollar short, but very often, there is nothing that could have been done and you have no business suggesting to a sick suffering person that it could.  It is just wrong.  Do not do this.

I have a separate post in the works at some point when I can do it charitably that will address attacks on science and scientists.  Just to make things fair I also have a post in the works that directly addresses the medical and scientific communities: *SPOILER ALERT* you are crap communicators and do yourselves and the public no favors with your crap communication.

So that's it, some guidelines for what not to say to people dealing with cancer, or really any other health crisis.

P.S.  If you do say one that is not 4a or 4b don't freak out, we all know you mean well and we've said them ourselves.

What about you dear readers?  If you've faced cancer or another medical crisis, what would like to suggest people NOT say?

20 comments:

  1. YOUR MEME MIGHT BE THE BEST THING i have ever seen (sorry about the caps locks). Can you do me a favor...because I certainly eff'd up about all of these (except 4, I have never done 4...do we live in a world where people actually do?), can you write a post on helpful things people said? I am trying to learn.
    Also,thank you for your future posts, I love them both. in advance :)

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    1. Yes yes we do live in that kind of world. See my comment.

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    2. Mary, I'm working on what you SHOULD say/do, I started with this because of Kendra's request and seriously, she's kind of a big deal :). Also, don't dwell on what you've said, everyone does it, I have done it, I guess it's less of a DO NOT (for 1 and 2) as much as it's a "look at it from this perspective". ALSO I do not make the meme's I just find them. Let's call it "curating" them. Fancy. I just google whatever I'm trying to convey with animated gif and see what other more creative people have done. Yay internet!

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  2. WAIT! Sorry. I have not done three either. At.all. but i have done one and two. a lot. okay. done.

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  3. Oops I have done/said most of these. Derp. But seriously after my daughter was diagnosed on the autism spectrum, MY OWN MOTHER said 4b. I mean vaccinations mom, are you kidding me? We nipped that right aways. I think people just want to say something for fear that they'll look completely insensitive if they just pat you on the shoulder or change the subject. It's tough to be that person who doesn't know what to say, I can't imagine. Not funny? Ok.

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    1. You're right Hafsa, people really want to help and they short circuit when they realize they can't help in a way that they think would be equal in scale to what you're dealing with. I'm a huge perpetrator in "open mouth insert foot" in all different ways. LOL I can't imagine!

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  4. Nella, this is PERFECT. Dead on. The exact same "Please, don't you dare say..." phrases I found frustrating for our really really really crummy deal too. Not quite like your fight, but yeah. Thank you for making me laugh. Making my hubby laugh. We said yes to all four (and a half).

    Oh, and I cannot wait for your commentary on the attacks of scientists. Much needed. Prayers still coming your way! Always.

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    1. I'm glad I could make you guys laugh. That makes my day. PS. your post about marriage in the aftermath of crisis is SO. MANY. KINDS. OF. GOOD!!!! Let's not compare battles huh? We're all called to be different kinds of soldiers. You are a blessing. That is all.

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  5. This is great Nella. Thank you so very much. Yes to Hafsa, I really do think that's what it is. We want to say SOMETHING even if we know it's stupid. And yes to Mary. Is there more we should say than just "I'm sorry. Here is dinner." I can't wait to read the rest.

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    1. Thank you for prompting me to write this Kendra...the shoulds are in the works. I'm going to channel my inner flower and be a bit less watering can to get it done.

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  6. Just finding your blog from #CathSorority. Love all the meme's! I never understand why people always say the worst things to people who are sick or have lost a loved one. I lost my dad when I was really young so I've heard it all!!! I had found this video once, "Things not to say to a widow." OMG HILARIOUS. My sister made me take it off my dads website b/c it had curse words.

    P.S. I like the top meme on your sidebar about google because sometimes when I get a pain or I'm ill I'll google it and WEB MD or Google will tell me I'm losing a limb, dying, or have cancer. (When I know it's not that serious)

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    1. Thanks Beth Anne! Like I said to Mary up there, I don't make the Memes, I just curate them. I'm glad you enjoy them...I totally ripped off the idea of using them from our dear Sarah at Wifeytini. I hear you about Google/WebMD. The day they end up being right is just like...wha?

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  7. Do not tell someone they have "the good kind" of cancer. Really? If its so good, would you like to have it in my place? I didn't think so.

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    1. I agree Anon! I usually beat people to the punch and always said I have the cadillac of cancers, but yeah, no cancer at all is much better. I've actually felt really conflicted about having and "easy" cancer but at the same time, bad stuff still happened. Thank you so much for adding to this conversation.

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  8. Wow so good, thank you! It is amazing how your blog posts can be so helpful in many of life's situations and to so many people. It hits home especially for me today because my father in law was recently diagnosed with stage 3(c) melanoma. he had surgery and will be going through radiation and interferon therapy (chemo does not work on his kind of cancer). and boy have I struggled with all of this (not 4 personally but I have witnessed people doing this ... my brother in law talked to my father in law in great detail on how he should eat raw food diet and that will cure him:( I know he means well but he is no expert ... a friend of mine who is very into all things natural also told me about alternative therapies, etc ... she too means well but needless to say I did not pass that info onto my in-laws - because I know if I were in his situation I too would be listening to my team at Roswell not a couple of people that see information on-line:)) - I digress ...my problem is that I have not said any of them actually I have not said much of anything at all because I don't know what to say ... I feel like I am the queen of saying dumb things - like at a funeral asking the grieving loved ones "how are you"? DUH they are SAD - ugh. So other than praying for my father in law, my mother in law (as you know Cancer effects the spouse too) and my husband and his 7 siblings that's it. I look forward to reading your post on what to do, as I can use the help;) Sorry if this seems all jumbled, that's what happens while typing with a 2 year old distracting me:)

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    1. Heather I'll pray for him! We all put our feet in our mouths now and then, and please know I'm praying for you guys!

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  9. I hope I didn't do too many of these! If I did, can I blame the pregnancy brain I had over the summer? I come from the place where I literally cannot ask for help. Honestly, I can't even ask my own parents to babysit. And at times when I have needed help, i.e. baby, steve in the hospital and people said "call me if you need anything." I felt like if these people really wanted to help they would "show up". So I apologize if I forced anything on you or your family. Still praying and much Love.

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    1. Katie, you were and ARE awesome!! Seriously seriously awesome. No need to blame anything on pregnancy brain except awesomeness! You are right, it's hard to accept help and when people do as much thinking for you as possible it is extremely helpful. You blessed us big time girl!

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