What Not To Say Part II: Merely a Flesh Wound!

Part II of What Not To Say, my tv show where people find out what NOT to say when talking to someone battling catastrophic illness. In this episode…

2. Merely a Flesh Wound!

a. “It’s all going to be ok”

I would suggest that for most people battling any kind of catastrophic illness with their children, the whole THING that makes it catastrophic is the underlying theme of “This really, really might NOT be ok”. Saying that it will be might make you feel better, but it makes the warrior or caregiver want to drop kick you (ok, maybe that’s just me) because it invalidates the depth of yikes being faced.

In Chemo Part 1 Section 2, back in 2005, one mom said to me, after finding out G had brain tumors (because G happily mentioned at her brother’s Little League baseball game that she was going to go on a Make a Wish trip but she wasn’t sure why—awkward!), “oh, but if the tumors are benign it’s not a big deal, right?”…to which I think I responded something like, “well, she’s still on CHEMOTHERAPY, and we can’t get the tumors out, and there’s no room for them to grow?” ; I didn’t even get to the vision loss and the neuropathy and the anxiety issues… and that was the last she ever spoke to me about it.

We don’t use the B word anymore. Nothing about the last 7 years has been benign. But I digress…

No parent EXPECTS people to understand the yikes. Truly. But don’t downplay it, dismiss it, or otherwise indicate that It Really Isn’t a Big Deal. Better to say nothing than to trivialize the crisis.

Honestly, I have some friends who CAN’T talk to me about my daughter’s illness, and I respect that and love that they are still my friends…the reason they can’t talk about it is BECAUSE the woe is so huge and scary. And part of ME being a friend to them is respecting THAT pain. I have friends who feel deeply about what’s going on, so deeply that they can’t talk “shop”. That in and of itself is an acknowledgement of OUR pain, and I see that as love. Does that make sense?

That’s technically a sneak peak of “Normalcy is Not a 4 Letter Word”…

Anyway, I get that it’s a hard balance between Uncle Clem and Pollyanna, but it is one worth at least trying to achieve.

WHAT TO SAY: “I am sorry. This must really rot.” Just acknowledge the yikes.
Or, “I can’t imagine how hard this is. I am just so sorry.”
That’s it. Thank you for acknowledging the reality of the situation. That means a lot.

b. “God doesn’t give you more than you can handle”

I’ve written about this before, in an earlier blog. He does. That’s ok. I mean, He does, but saying He doesn’t again diminishes the pain of the moment. It does not EASE pain, it just brings on this feeling of “well DANG, I am even screwing up being smote because this sure as heck FEELS like more than I can handle!” God may give us grace for each moment (sometimes even THAT is hard to tell), but that’s a different issue.

WHAT TO SAY: “Hey, I’ll pray for you.” Or, “I wish I could make it better.” We wish that too, and we appreciate the acknowledgement of our pain. (at least I do).

A sub-whatever of this is

c. “You are SO STRONG!”

Ok, so this is not an offensive thing to say. It’s just kind of…separating? Isolating? Like, the person battling is so strong in a way that makes them Different. Catastrophic illness is different and isolating enough. While this is really not said in a way that is meant to be sniggy—to the contrary, I think it’s supposed to be upliftin?-- admiration or whatever that is (fearful respect of the “there but for the grace of God go I” variety? ) isn’t quite what a warrior/caregiver needs.

Speaking from personal experience, “strength” is not generally the feeling that one has mid-battle. Sleep deprived? Stressed? Irritable? Hungry? Not hungry? Unfocused? These are better descriptions of way I feel most days. As a parent caring for a child with a catastrophic illness, I would LOVE to just hide under my bed some days. I do vacuum under there, it’s clean and my bed is pretty high up (it’s kind of old fashioned), so I would fit. I could live under there and just pretend that none of this ever happened.

Heck, there were days when my kids were all little that hiding under the bed seemed like a plan. Those toddlers can ALWAYS find you. I didn’t have a choice THEN. I certainly don’t NOW. Maybe doing what you ‘ve gotta do is strength, but it just feels awkward and stupid and kind of isolating to hear it said that way. Until I have a patriotic bustier and a Lasso of Truth (and the physique to literally carry that ensemble, ahem), I am not Wonder Woman. So this should go on the list of things to please not say.

WHAT TO SAY: “Your kid is so mighty.”

I know. This seems like the same thing, but I don’t think it is. In my mind, mighty acknowledges that something tough is being faced, perhaps with anxiety and trepidation but ultimately with resolve. It’s a semantic difference, but mighty seems more accurate. Also, I think my kid is WAY MIGHTIER THAN I AM. So thank you for noticing. : )

Next Time: I Thank God Almighty That I'm Holier Than Thou .