By Andi Straus
Dear Friends,
Due to some technology issues, I have been unable to respond to your lovely comments on my first blog post, but please know I read all of them, and am so touched by the honesty and vulnerability of what you shared, and how what I wrote resonated with so many of you. Thank you.
When people learn we have cancer…
I have been thinking a lot over the past few months about the well intentioned things that people say to us when they learn we have cancer, many of which would have been better left unsaid. I have some sympathy for them because I know that in the past I have also felt that I don’t know what to say when someone delivers news that is so sad or frightening or overwhelming that whatever I might say would be wrong, inadequate, or trite. It can be really hard to know how to comfort someone, to want desperately to say just the right thing. However, now that I’m on the other side, the cancer side, I’ve put together a list of some of the comments and recommendations that have been particularly hard for me to hear.
Everyone I’ve spoken to who has a cancer diagnosis has a version of this list, and at times it is a source of humor for us to compare notes and shake our heads together and ask ourselves, “What could they have been thinking?” In my experience I’ve found that humor helps cushion the potential injury of some of these comments, helps me not to take myself so seriously.
I have followed my list of unhelpful comments below with a few of the things that have been really helpful to me and to others traveling this path with me. Please feel free to add your own, both the negative and the positive.
Here is my list of the top 10 things (along with some editorializing) that I wish people had not said to me or to others like me (in no particular order):
1) “At least… you don’t have the cancer that my mother/grandfather or other friend had,” and other variations of this, such as, “at least you don’t need radiation, a specific chemotherapy, or your hair isn’t falling out.”
Any sentence that begins with “at least” is a non-starter. I don’t know why people think this kind of thing is comforting. Maybe it’s because they want to show us that they understand what we’re going through because they’ve been through something similar with someone else, but all it does for me is make me feel diminished and unseen.
2) “Everything happens for a reason.”
This one is just so immensely tone deaf. What could possibly be a good reason for anyone to have a terminal illness?
3) “Just ask me if there’s anything I can do to help.” (see helpful version of this below)
4) “My Aunt Mary had that and she died/was sick/had a terrible time.”
Hearing that someone did poorly with our kind of cancer is depressing. Very depressing.
5) “You must try this essential oil/unproven treatment/dietary regimen, or this hospital/oncologist/surgeon.”
I can assure you that my oncology team is familiar with all the current research as well as Google, and if there were a cutting edge treatment or cure out there, I know my team would be aware of it. Also, when someone tells me I must see a particular doctor or go to a particular hospital, it undermines my feelings of competence in finding appropriate and skilled care for myself. Not helpful, unless of course we ask for a recommendation.
6) “None of us knows when we’re going to die.”
This is said along with the phrase,“I could get hit by a bus anytime.”
This may be true, but someone equating my terminal cancer diagnosis with a general platitude about fate is just not helpful.
7) “A positive attitude is essential to your conquering your cancer.”
I find this one particularly harmful because it implies that if I don’t have a positive attitude, I am hastening my own death. This is in line with so much of the toxic positivity that is around these days where any expression of honest grief or pain is frowned upon. With that said, some people are able to stay remarkably positive during diagnosis and treatment, and this is great, but it is hurtful to blame a patient’s health on their attitude or suggest that everyone should be any particular way.
8) All war references
This is not a war where the construct is about winners and losers. The concept of being at war with our own bodies is so destructive. It’s not about winning or losing. At all. We are in partnership with our providers, our friends and families, our communities, and places like Ann’s Place, in an effort to heal.
9) “God doesn’t give you more than you can handle.”
Mercifully, this has not been said to me, but I know countless others who are so pained at the thought that God would be engaged in testing our capacity to suffer.
10) “I know just how you feel.”
No. No. You really don’t. But do ask me how I feel if you’d like to know.
And here are some of the things that have helped me and others:
“Can I shop for you/cook you dinner/visit/take your garbage out/drive you someplace/take the kids for a couple of hours?” I found concrete suggestions and actions immensely useful, because sometimes it’s hard to know what to ask for. My sister reminded me that a friend of hers showed up at her house with a toilet brush and cleaned her bathrooms. I can’t think of anything more concrete or helpful. In addition, once something was suggested to me, I was even able to ask for something else if I didn’t need what was offered. It was so useful to have a jumping off point and to know the offer was genuine. I also appreciated people who offered to help more than once . I found most things needed to be done over and over again, and it was hard, when I was feeling sick, to keep asking for help. Sometimes it was hard to ask for help altogether.
I also appreciated calls from people who said, “I’m here to listen if you feel like talking,” and didn’t wait for me to reach out to them.
However, the flip side of this is that sometimes I was not up to responding to everyone, or to answering the same inquiries over and over again. A resource I have found helpful throughout my journey, that addresses this challenge, is an online website called CaringBridge, a site that allows friends, family, and anyone you would like to include, to be informed about what is happening with you, and to connect and share information in one virtual place. On this and similar caregiving sites, you can designate administrators, or even yourself, to add people who will receive the updates and to manage the exchanges. You can write journal entries and comment on what people are saying without having to respond to each message individually and, best of all, it is free of charge and user friendly. It’s also a good way for people who are connected by caring for you to connect with one another. Here’s the link if you want to check it out: https://www.caringbridge.org/.
I hope that readers of this blog who have experienced cancer, as well as caregivers, will feel free to add their thoughts and comments here about what is helpful and what is not helpful. I know we can all learn from one another and respond to one another’s pain and suffering in more sensitive, creative and supportive ways.