We’re not taught how to really support people going through difficult times.
Often, it's almost like the socially-acceptable response is to fumble over some kind of (even profoundly and wholeheartedly meant) "I'm sorry"...and then go on with life, hoping things get better but, at the same time, being almost too afraid of the answer to even ask.
What if, instead, we learned how to be compassionate, but also proactive?
I'll admit that, even in my own life, even as I've formed these ideas, I'm still not doing this as well as I could be. Honestly, it's still solidifying for me and I'm still finding my post-cancer footing.
I am writing this today for all of us: not in anger or fueled by "shoulds" or "poor me"s, or an attitude of high maintenance (p.s. cancer treatment is high maintenance! It's not pink and fluffy and nbd - but that's another story for another day) but, instead, as a way for us to start to re-evaluate how we treat people faced with enormous (and often sudden) challenges.
These are all of my personal opinions, based on my own experiences with breast cancer and beyond. You don't have to embrace them: but I hope that this is able to create some space for you to think about how you can navigate these situations, too.
What do we do, when someone needs help?
My first question, aimed at "society/societal norms" and certainly not at any one peson or group of people is, why don't we have "showers" for people with life-altering conditions?
While I certainly wasn’t up for a “party," when faced with all of the additional things I needed during my treatment (heavy-duty lotion when my skin was peeling in sheets from chemo; head scarves for when my hair fell out; an extendable shower head, for when I could barely move my arms after surgery; a button-up shirt for the same; and so much more...), it quickly became a lot a whole lot.
Why aren’t gift registries for severe/chronic illnesses a thing?
Truly. They'd help. Keep reading, for why/how.
We give (often unnecessarily, in today’s modern society) gifts lavishly and joyfully when people make life choices (ie, having a baby, getting married). And that's fine! But when someone has a catastrophic event, we…send thoughts and prayers? Maybe scrawled in a card? Sent as a text message? Possibly said in a phone call?
I am privileged to have excellent health insurance…and this was still an incredibly costly experience. In the first month of diagnosis alone, I had spent over $1,000 out of pocket, just on copays (doctors, MRI, CT, PET, chest echo…). And that doesn't include all of the other things that came along (medications, more doctor appointments, surgeries, more doctor appointments, supplies, specialty items, even more doctor appointments...).
We should be actively supporting people: not shying away from conversations about how to actually support people through life-altering events.
Chronic or sudden major illness is expensive - in the best scenario. It can easily be catastrophic, even if things are "generally pretty good" for the person.
If we can give gifts for open spending on honeymoons and crystal goblets that are used once and then collect dust in a curio for decades…can’t we also give gifts that help our friends and extended family pay for live-saving, often long-term, extremely costly care?
Why isn’t this the norm?
Cooking and delivering food is a safe bet - or is it?
Everyone needs to eat! Right...?
We also need to rethink how we give gifts: the common “take them food!” wisdom assumes two things: 1) that they are up for your company (even just to drop it off) and 2) that they can tolerate what you make. When I was going through chemo, I had periods where there were only certain foods I could tolerate, because others turned my stomach. Sometimes, even the thought or smell of certain foods triggered a wave of nausea (and I barely had any drug-induced nausea throughout chemo).
While I was going through chemo, I couldn’t even LOOK at a raw vegetable, let alone eat one. While “making food” for people you love comes from all the best intentions and a truly heartfelt place, it may not be practical (unless requested, of course; or unless there are kids/others to feed, where any food would likely go to good use) - even if they are foods the person previously loved. In fact, one of the things you learn during your first chemo session is to NOT try to eat your favorite foods, right after (or maybe even at all) during chemo. Chemo alters your tastes: and some people can be really put off by even their most favorite foods during this change. Some people have such severe taste changes, that if they eat a previously favorite food that doesn't taste good to them during this time, they NEVER regain their love of it again. That's a strong tale of caution - and extra incentive to not "force" foods on someone going through chemo.
Here's an example from my own experience: I love vegetables! I was juicing every day, up until I started chemo, to boost my strength and get all of the nutrients in that I could. As soon as I started chemo, I could barely tolerate cooked vegetables - and raw vegetables, including juice, were an absolute no-go. Sometimes I knew what I didn't want (it just didn't "sound good"). Other times, I had to see or smell something, to know I didn't want it. And still others, I'd take a bite of something only to find out my BODY didn't want it. It's so individual and so situational that it's truly best to let your person dictate what they do or don't feel up to - day by day, meal by meal.
With regard to the second part of this point, seeing people, I also want to be clear that it's not personal. And varies, wildly. There were some days I was desperate to feel well enough to see people…but I was so depressed I couldn’t even return a text for two weeks. I wouldn’t have answered the door, if someone had come over; even to drop off food.
Additionally, some people won't want you to see them "down," even if you don't care how they look. Some people will want you to see them as their former self, or "fixed up" with a wig, makeup, normal clothes...not in a head scarf and pajamas, for the sixth week in a row. Whether YOU care or not - whether that matters to YOU or not, please respect what they need, during this time.
Send DoorDash, GrubHub or similar meal delivery gift cards (check to see that the service you send, delivers to their address). They get to choose what they want (or what they can eat) and can lay on their couch in their pj's until it's delivered at their door. You help keep them fed, without any of the pitfalls mentioned earlier.
Show you care, if you send a care package
Additionally, care packages - while thoughtful - can be problematic in the same ways. If the products contain ingredients they can’t or won’t use (toxic/carcinogenic compounds, fragrances, and dyes are ingredients I'll never use - and especially didn't want while going through CANCER treatment), or if they’re doubles of something they’ll never get through all of in the first place (you can only use so many jumbo-size mouthwash bottles!), it’s wasted money and wasted effort/emotion, on both ends.
Again, the message here is simple: just ask what they need or WANT. If they don't know, don't want you to feel obligated to spend money, are too tired, or you are uncomfortable asking, just send an easy-to-use gift card (Amazon is a great choice: huge selection, fast delivery. Target is better than a specialty store like Trader Joe's: they offer delivery or pickup and have all kinds of things, including clothes, food, hygiene products, and basic medications).
Are you supporting their needs...or yours?
I (and they) get it: you want SO BADLY to help. To take away the fear, pain, discomfort, uncertainty, side effects...but truly, in most situations, you can't. So what is the next best thing? Listening to what they do need (or ask for) and doing those things. What is the worst thing you can do? Ignoring or discounting what they say and trying to force your feelings (or ideas of "support") onto them.
Please don’t force “help” or “support” they don’t need. If they tell you that something isn’t supportive, no matter how much you think it is (or want it to be), just listen to them. Respect how they are feeling. Don’t keep pushing when they are telling you that they don't want something.
Here's an example from my own treatment.
A common thing you "see on tv" to do to support a loved one with cancer, is to shave your head when they lose their hair to the meds. I get where this comes from - I truly do. And I can also see how this can feel supportive to some people - and that is great! If you know someone who finds that supportive, and you are willing to engage in that kind of solidarity with them, definitely do it! I'd never try to talk you out of it.
However, there are people who do NOT find this supportive - and I was one of those people.
It made me uncomfortable. It made me upset. I did not want to look at someone's shaved head every day, as a reminder about mine. Again, that is how *I* felt. But in this person's enthusiasm to support me in this way, they stopped listening to me. The disregarded how I felt. The argued that IT WAS SUPPORTIVE!!!! even though I kept saying that I did not find it to be such. And I had to argue vehemently - over and over, for days - about how I did not want that, how it would make me MORE upset, and how it was actually harmful.
At some point, they finally gave in. But it was exhausting, frustrating, and extremely disheartening for me, to have to spend more of my energy fighting this person who meant well but wouldn't listen to me, to get them to NOT harm me more. During cancer treatment. Whew.
Don't take things personally - including this list!
Did this trigger you?
Did this make you feel defensive?
Did you want to say, "BUT WHAT ABOUT..." as you were reading?
Please remember that this list is not about you. Absolutely none of it. It is not intended to dissuade you from helping your loved ones. It's not meant to sound as if there is nothing to do. In fact, it's here with the opposite hope: that you can use how *I* felt, to help you navigate and better support how your loved one MAY feel (they may not, too - and again, that's okay!).
This also does not mean that your loved ones are ungrateful and/or do not appreciate that you want to help/demonstrate your support!!! Quite the opposite, in fact. We don’t want you to waste your money on things we won’t or can’t use - and we don't want you feeling like you've wasted time, money, energy, or effort if we can't use your otherwise-thoughtful gifts. But we also don't want to use our energy to figure out where to shuffle away things that we can't use, when it's already difficult to get out of bed some days. You feel me?
Here's the truth:
- We don’t want to tell you not to come over, because we’d prefer to just feel well enough to see you.
- We don’t want you to spend time, money, and energy on food that we’ll throw away or stuff in our freezer for...who knows when.
- We are trying to put on our own brave faces, FOR YOU.
- And we def don’t want to feel like a burden. Even a little. Ever.
So how CAN you help?
Things people with chronic/life-changing illnesses really do need:
- They need food delivery gift cards (to choose when/what they’d like - and not need to go anywhere, to get it).
- They need Amazon (or similar) gift cards (for a range of items, delivered right to their door).
- They need you to listen to them (because they don’t have the energy to argue with you about what they need and how they feel)
- They need your support, but with no strings attached. "No need to reply, but I wanted you to know I'm thinking of you!" is always a great text message to send.
They need you to remember that THEY are the ones going through it. They get (really, truly) that it’s ALSO happening to you. But they are the ones who will go through treatment, grapple intensely with mortality, and have to figure out how to navigate their entire life (which doesn’t stop) in the face of this. Please don’t *also* make them feel like they have to help you manage your emotions.
Go for a walk. Call someone else and vent or yell. Hire a coach. Join a support group. But please do your best to not just dump on your loved one. They're going through a whole lot, too.
If all else fails: check your motives
Do we want to help? Or do we want to be martyrs?
If it’s the first, please listen, be flexible, and give (if you choose to) in a way that allows your person to actually benefit from it. They will be so grateful. If it’s the latter…please reevaluate or, at the very least, do so with someone who is feeling well and has the capacity to meet that energy.
All my love and support through this,