A Quick Note: I will be at the World Domination Summit next month in Portland, Oregon. Are you going? If so let me know — it would be great to connect!
Two posts in three days — I’m on a roll!
As many of you picked up from the tone of my last article, I am feeling much, much better. As more time has passed from the disasters of six weeks ago when I lost my relationship and home (making me feel more physically ill than I had felt this entire time), my body has finally had a chance to recover. I also have benefitted from a three-week break between chemo doses, although, sadly, yesterday marked the start of my next round, which will last eight weeks and include doses as frequent as five days a week.
Given everything that’s happened, it was a natural decision for me to move from Los Angeles to my home in the Bay Area, where I can get my oncology care at Stanford while benefitting from the fully-stocked fridge and plentiful doting of my parents. I plan to stay up here at least for the next two months, and possibly longer, depending on how I’m feeling and for how long I need the help.
I have been wanting to write Tuesday’s article for a while — having spent months digesting my observations on how other’s interact with me — and so it was as cathartic for me to post as it seems it was for many of you to read.
I want to add, too, that I am seriously impressed by the comments and messages many of you left in response, both from those of you sharing your own experiences (I don’t think I’ve laughed out loud so many times reading your emails — one guy described an incident where a well-meaning coworker wordlessly put her hands on his head, as if in prayer, for several minutes before walking away and leaving him to wonder what the hell just happened), and from those of you considering if you see yourself in any of my stories, sincerely wanting to learn from them so you can become better friends and family members.
I feel honored to have such a high level of discourse on my blog and such extraordinary people reading my writing.
Since my last post described so many examples of what not to do, it felt like a natural follow up to give some guidelines that will help you be a better supporter to someone dealing with cancer (and probably illness and major life catastrophes in general).
1. First and foremost: It’s not about you anymore — it’s about them. Cancer is serious. It is life-threatening. It messes with your mind by destroying your faith in fairness and safety in the world; it messes with your body by making you feel so sick that many days feel like cruel torture rather than life.
As bad as you think it is, it is worse. As much as it can be difficult to be around someone with cancer, it is not remotely close to how difficult it is having it.
On top of that, cancer seems to create a cruel irony where the person suffering with it no longer can spent as much time focusing on other’s needs, and, simultaneously, others feel compelled to project their own needs and problems onto that person. To be of service to someone with cancer, you must have (or develop really fast) the self-awareness not to make their illness about you, in any way.
Many people seem to understand this on a superficial level without really understanding it. Are you going to be okay with things like unreturned calls or emails? Are you going to be upset if you give a gift and don’t get a thank-you card in return? Is your caring going to manifest as trying to control?
When I was first diagnosed, many people suddenly came out of the woodwork eager to help. Many of these people were genuine and respectful, sending kind messages and hopeful words without expecting anything in return — but many others tried to push contact on me even though our relationship prior wasn’t that close.
I remember feeling completely overwhelmed when people I didn’t know that well kept calling or emailing, insisting they wanted to visit. A person’s cancer diagnosis may make you suddenly want to reach out to them — but that person may or may not be in the mood for making new friends.
It felt as if others heard my story and wanted to touch it, be close to it, bask in it in some strange and self-serving way. I had several visitors who were obviously there just to check off the “visit cancer patient” box on their to-do list and then move on with their lives. If you imagine yourself visiting your ill friend only once, consider if you fit in this category.
When approaching someone with cancer, you must consider, carefully, the true motivations behind why you say what you say and why you do what you do. We’d all like to thing we’re altruistic and selfless, but as human beings, many of us are in the habit of using others to meet our needs rather than the other way around.
The problem is that now, subtly self-involved motivations can be damaging or distressing to the person you are trying to support. You can easily do more harm than good. The person already has the burden of their illness; imagine the additional burden of trying to fulfill the complicated needs of others who project their issues onto them when their sick. You can’t make it about you. It’s not about you.
Not making it about you means:
Giving help without the expectation of getting anything in return.
Not forcing your help onto someone who doesn’t want it.
Remembering that their cancer is their burden and their story — not yours.
Respecting the other person’s belief systems and preferences about medical treatment.
Respecting the other person’s right to privacy.
Staying away if you don’t have the character to deal with it (and I mean no judgment by this — not everyone does).
2. Be honest and authentic. Avoid cliches. When you don’t know what to say, listen. Meaningless platitudes tend to spill out of people’s mouths when they feel uncomfortable and don’t know what to say. But — cancer does not suddenly require you to solve someone else’s problems with your words.
Are you sad, afraid, confused, do you not know what to say? Just say that. Also, say less, and listen more. I never expect anyone to say the “perfect” words to me — I usually just want people to listen. And if we’re friends, it’s for a reason. Just be yourself.
Your words need not be sophisticated to be authentic:
“How are you?”
“That sucks, I’m sorry.”
“I’m thinking of you.”
“I hope things get better for you.”
“I love you.”
If you can imagine your words printed inside an inspirational book of quotes… don’t say them.
3. Offer advice carefully, if at all. So much advice is offered to people dealing with cancer for the benefit of the ego of the person offering it rather than because it is actually useful. Before giving any advice, ask yourself, who is this for?
Almost all the helpful advice I have gotten has come exclusively from people who have had cancer or who have been close to someone with cancer, speaking from their own experiences, talking specifically. Things like: Get a port instead of a PICC; use EMLA cream before your port is accessed; it’s okay if your feelings are hurt when xyz happens; try edibles for nausea.
If you’ve never dealt with what the other person is dealing with, consider whether your advice is so crucial. Remember that your friend likely has a thousand other people trying to tell them what to do.
Unless you’re a healthcare practitioner, avoid giving medical advice. I had, disturbingly, dozens of people email me telling me chemotherapy was poison and I should avoid it at all costs (it is poison, but it’s poison that will save my life).
4. If you don’t know what to say, ask. If you don’t know what to do, ask. I write from my own experiences, but others will have different preferences. I, for example, love when friends visit; I know others who have preferred to battle their illness with family alone.
No one will expect you to automatically know what they want, so don’t feel uncomfortable asking directly.
“Do you like it when I visit or do you prefer being alone?”
“Would it be helpful or annoying if I called regularly?”
“When I said xyz did it bother you?”
“Is it okay if I update other people on your situation?”
Illness steals your independence and autonomy. I struggle regularly with wanting help but feeling conflicted that I need it. Many people, without meaning to, infantilize me or push physical or emotional boundaries (asking intrusive personal questions, for example, or touching me when the situation or our relationship doesn’t warrant it).
Different people will have different comfort levels with physical and emotional intimacy. I especially appreciate when people ask me about my boundaries. “Is it okay if I rub your head?” (when people ask, I usually don’t mind) or “Are you up for talking about this right now?”
Asking relieves you of the responsibility of having to come up with the “right” thing to say or do. Asking communicates respect. Asking gives control back to the other person — a gift when so much control has been stolen from them.
5. Reliable, consistent help is much more valuable than rare bursts of enthusiasm. Cancer treatments usually last a long time. While people show the most enthusiasm for helping right after a diagnosis, your buddy with cancer will need support for a lot longer than that.
Before I moved in with my cousin (who, by the way, could write the book on how to support someone with serious illness) she regularly texted me to see if I needed anything.
I knew that, like clockwork, I would hear from her every Monday and Wednesday with an offer to drop off groceries, and that every Thursday she would come by for a visit. She told me later she had set a calendar alert on her phone to remind her to get in touch with me on a schedule. On top of that, knowing that I would need help for a long, long time, she offered to send a cleaning lady to my house for the entire year. (Yes, she is a saint, I know).
One of my attendings lived near me and would call whenever she was driving by our neighborhood Whole Foods. When I saw her name on the caller ID I knew I she was available to stop by and deliver food, but I didn’t need to feel obligated to take the call if I was tired or just not up for it. She was also sensitive to the fact that sometimes I might just want the food and not the visit.
One friend, a coresident, regularly left home-cooked meals in our library’s mini-fridge for me to pick up when I was on campus for doctor’s appointments. Another took me out for monthly pedicures. Many friends have visited me regularly in chemo.
Another friend, who doesn’t have a lot of time but has a lot of money, generously paid for many of my Uber rides. I have a few “moms” (my mom, birthmom, and ex-boyfriend’s mom) who visited for a week at a time or more, cooking all of my meals, driving me to my appointments, and keeping me company.
You don’t need to do as much as these people to be of service. Rather, consider thoughtfully what you can realistically offer throughout a person’s treatments (even if it’s just a text checking in), and try to offer it regularly.
Apart from hearing “No need to respond” with offers of help, another phrase that’s been music to my ears is, “Take me up on this offer whenever. It’s an open invitation.” I know that I can follow up with this person at any point — a month, three months, six months — and the offer will be just as sincere as it was when it was made.
6. Whatever you do, and it saddens me that I even have to say this — do not offer help you if you are not prepared to follow through with it.
This was one of the cruelest things that well-meaning people did to me. I remember getting several offers of visits that never happened. Others ignored my calls or texts when I needed them. One person said she was coming to visit me in the hospital and then never showed up — twice. I remember that, in my ill, lonely, and emotionally hypersensitive state, I cried when I realized she wasn’t going to come.
People offer help they’re never going to give for many reasons (perhaps they want to believe they’re a helpful type of person, or perhaps they just felt obligated in the moment), but ultimately, the reasons don’t matter. This type of “generosity” is selfish, damaging, and cruel to the person onto whom you are inflicting it. It is much better not to offer help in the first place.
Just because you know someone with cancer does not mean you’re suddenly obligated to be their savior. The one thing you ARE obligated to do is not make their life any more difficult than it already is. Sometimes the most compassionate thing to do is stay out of the person’s life.
7. When in doubt, offer practical help. When you are ill, the daily grind becomes much more difficult. I am usually so sick I’m not able to prepare my own food, let alone go shopping for groceries. I haven’t driven in months. Simple errands turn into near-insurmountable hurdles. Lying on the couch all day becomes lonely and isolating.
The most helpful things people have done for me: delivered food, given rides, shown up at my house or at chemo and offered company. The words “let me know if you need anything” are usually hollow, but when said by those few who mean them, are tremendously reassuring when unexpected problems are frequent and frustrating to deal with alone. I’ve called on friends to pick up prescriptions for me, bring me snacks when I’m stuck in chemo, help me move, etc.
8. Your love can save a person’s life. Your love is important. My closest friends and family — my biggest supporters — have not just helped me with a few meals or a few rides. They’ve shown me, at a time when I don’t feel like I’m living, that there is a reason I keep going to chemo every day. They show me I at least have a life worth coming back to.
I think so often about wanting to share my appreciation with everyone who’s helped me, and will put “call so and so” on my to do list, or keep emails for inordinately long periods of time hoping I will have the chance to respond to them.
Inevitably, I don’t have the time or words to reach out to everyone I want to, and while I know those helping me aren’t the type of people who need my appreciation, I hope they know I think about them often, that what they do for me goes far beyond the tangible support they give.
If you have a friend or family member going through a cancer diagnosis, you have an opportunity to show up and be the best kind of person who exists on this planet. You have the chance to give faith in life to a person who has probably lost it. If you can, step up and do it.
Photo by Kris