The longer I live with Stage IV Metastatic Breast Cancer (MBC), the more amazing people I’m privileged to meet and do life with. One of those people who I consider a treasured friend is Dr. Andrew Silver. He is a professor at Mercer University, the author of IV Our Lives, an amazing play based on the experiences of this of us with MBC (you can read about it and listen to some excerpts here and here), a father of a young adult, the widower of Dr. Anya Silver, who died of Metastatic Inflammatory Breast Cancer in2018 and the husband of Sarah Gerwig, a lawyer, professor and dealing with life threatening long Covid.
Recently, Dr. Silver posted on Facebook about some of the struggles he and Sarah are experiencing.
If you’re interested, here are eight ways to help friends who are experiencing acute or chronic health crises.
But first, context. You can skip to the numbers if you want the short(er) version:
The past two years have brought beautiful love and deep joy, but they’ve also brought chronic illness and intense suffering on many different fronts. Most know about the joy (I hope), but I don’t think most people know the extent of that suffering. I see now that it’s helpful for more to know, since that might prevent miscommunication or misunderstanding. Sometimes we who deal with chronic or acute illness think if we fake it, we’ll make it, or at least we’ll trick ourselves into surviving. And faking it might work for us, but it can give friends the wrong impression of a linear path to wellness that simply does not exist.
Whatever you imagine Sarah’s health crisis is, it’s worse than you think. I can’t give you a hospital chart or a list of hospital visits and trips to urgent care or the emergency room–it would be too long (Sarah sometimes breaks down entirely reciting it to doctors and nurses)–but I’ve seen weeks where I didn’t honestly know whether Sarah was going to live to see the next week. Here’s just one example. Sarah had a fever of over a hundred for three months straight, and the fever came in the midst of long-Covid wheezing breathlessness, low heart and oxygen rate, chronic sleeplessness, exhaustion, and acute nausea that has prevented her from eating a real meal for over a year. I’m leaving a good bit out here. During those months with fever, we were in and out of urgent care here in Macon with fever, dizziness, confusion, and low oxygen—symptoms that can signal an acute healthcare emergency, and symptoms I’ve seen before sudden death—but still we had no diagnosis. If it hadn’t been for Mayo Clinic’s finding strep B in a blood test, Sarah might well have died of sepsis, just as a friend of hers died in her forties of undiagnosed strep B. And that’s just one of many causes of sleeplessness, pain, and exhaustion. That’s just one emergency among dozens. And I’m leaving out other family healthcare emergencies, equally stressful—as in “too-much-for-two-people” stressful–but you get the picture: these last two years have been a roller-coaster ride through multiple, acute health crises. I can’t express how difficult it is to watch someone you love and live with suffer in pain indefinitely, but those of you who’ve had that experience know exactly what I’m writing about and how difficult it is to get across the reality of that experience to other people. And, as anyone who is chronically ill or a caregiver to someone who is chronically ill knows, you can experience happiness and joy right alongside acute suffering. Every day. So don’t be thrown by happy Facebook photos: the happiness is absolutely real, and we want to share that happiness, but we’re sparing you the daily photos of suffering.https://www.facebook.com/andrew.brian.silver
After giving that background, Dr. Silver went on to say …
And in the midst of this two year journey through chronic illness with Sarah, I’ve relied so much on good friends, and I’ve been deeply saddened to see some friends fall off the face of the earth. So for those of you who might know someone with chronic illness or a caregiver living with someone with chronic illness, here are eight ways to be a good friend—to be a lifeline to someone experiencing healthcare crises:
Before I get to the excellent list of recommendations, let me just say that the experiences Dr. Silver references as to the differences between those friends who lean in and those who ghost are pretty ubiquitous in the MBC Community. He’s experienced those differences in two contexts, MBC and now long-Covid.
And it’s excruciating.
Without further ado, here’s the list — please save this list because it is relevant to so many things and will come in handy:
ASK QUESTIONS AND LISTEN. If you’re a friend, you care, and if you care, then you’ll ask questions. If you have no curiosity, you have no compassion. Someone with chronic illness or their caregiver might not want to give you an hour-long litany of woes, and you should respect it if they don’t want to talk about suffering, but often it’s a relief just to have someone else understand the weight of it all. The other day, I walked around Tattnall Square Park telling a friend I hadn’t seen in awhile about just the last few months, and I still had plenty left unsaid afterwards. But it felt good, a burden shared, just to have someone who knew and empathized—who acknowledged the enormity, the “too-muchness” of it all. Sometimes just hearing someone register that heaviness is validating. Check in. Don’t check out. And if you haven’t heard from someone who is chronically ill or a caregiver, assume something is wrong. Don’t assume they’re angry with you. Just reach out. And reach out more than once if you need to.
ALWAYS CONTEXTUALIZE AND DON’T INVENT INTENTION. Someone who is suffering or caring for someone who is suffering will chronically feel deep, deep stress. If you’re present to witness that stress, don’t assume motivation without asking. We’re not stressed at you or stressed about you; we’re angry and stressed at witnessing suffering. Or maybe we’re angry and stressed because we’re away from someone suffering who needs our help. Don’t be a stress-narcissist. Our stress likely has nothing to do with you. It has to do with the entirety of suffering or witnessing suffering.
UNDERSTAND WHEN PLANS CHANGE. If a caregiver or someone who is chronically ill puts a project on hold, or if plans suddenly shift, we’re not changing plans to hurt you or anyone involved in the project. We’re putting the project on hold or we’re shifting plans because we’re drowning. And if we’ve told you that we’re struggling and that we might need to change or delay plans, and then we do change or delay plans, please be understanding, rather than judgmental. We’re changing plans so we can help someone who is suffering or because we are suffering. Here’s just one example of too many. Up until the week of our wedding, we weren’t sure we could have a wedding (same for the honeymoon). So I invited virtually nobody from out of town to the wedding beyond my father, step-mother, and sisters—people I figured would be happy showing up even if we canceled the wedding and were in the hospital on what should have been our wedding day. Some family took offense when they didn’t get an invitation, or when they got a late invitation. Please remember the context and understand when plans change, it’s owing to health, not negligence. Don’t easily take offense. Assume there’s something wrong, because there is.
DON’T ADD STRESS TO STRESS. If a friend is a true friend, they’ll understand when someone who is chronically ill or a caregiver to someone who is chronically ill might want temporary relief from stressful subjects or situations—might simply want to reconnect without hashing out old miscommunications, reopening old wounds, talking about subject matters that are deeply unsettling. When it feels as though one more source of stress is going to break us—when we have difficulty breathing because of stress—what we need most is relief from stress, not more of it. Be present without preconditions for friendship, without judgment, without attributions of malicious intent. Just be there. Don’t walk away.
RESPOND TO DISTRESS CALLS. If someone puts out an SOS, if you’re a friend, you will never, never ignore that distress call. Full stop. No excuses. Drop a line. Drop a note. Show up on a doorstep. Don’t be silent.
THINK SMALL. Lunch, a drink, a song, a film, some laughter—it doesn’t take much to help someone who is living through an acute healthcare crisis. We’re fumbling for the proverbial oxygen mask to keep ourselves steady through inexpressible difficulty. (And some of us, Sarah included, are fumbling for literal oxygen masks as well). Small things can help deliver relief so we can keep going. But small should also mean concrete. Don’t just say “I’m here for you”—though that’s a whole lot better than walking away in anger or avoidance—but instead make specific offers (meals, gift cards, help with laundry, the garden, childcare, a night of music, whatever). If you’re not in a position to provide concrete small things, just checking in can also be a kindness.
BE PRESENT AND BE SUPPORTIVE. This should be simplest. A friend should be there in the worst times to sit with another’s pain. I’ve been stunned by this simple failure, and frankly it’s sometimes the best people who fail the worst when it comes to understanding suffering. A true friend will also encourage care/ self-care for the sick person and the caregiver. It’s all exhausting. Offer emotional support for taking a break/ taking leave/ taking FMLA/ taking a vacation. As Sarah says, “Being sick at home sucks. Being sick away from home is often a little nicer— illness with a view.” Don’t make people feel guilty for taking some peace. Be supportive whenever you can.
ADMIT WHEN YOU SCREW UP. As a caregiver, I screw up often. And I apologize often for screwing up. Friends are not superheroes: it’s easy to screw up, and it’s ok to screw up. It’s ok to occasionally fail those experiencing acute or chronic health crises. I’d argue it’s hard not to screw up in these deeply fraught situations, especially if you’re stressed out too. Even big failures are not unforgivable. But it helps to recognize when you screw up. And it helps even more to ask forgiveness.
So that’s it. Caregivers or those who are chronically/acutely ill can make difficult friends—we’re stressed, worried, and often suffering day in and day out (and some days, it can feel inexpressibly hard). You may not be able to lift suffering, but don’t disappear. I’ve seen deeply good people fail to be good friends in these situations, and I’ve seen people I’ve only known in passing rise to the occasion of suffering. As a caregiver, I’ve been saved by strangers as much as I’ve been saved by friends. And that’s how strangers become great friends and great friends become strangers.
If you’re a friend, don’t be a stranger. And if you’re a stranger, don’t be afraid to be a friend. And thanks to all the strangers and friends who’ve held Sarah and me up.
Again, save this list.
You will need it at some point when you encounter suffering in someone you know and you wonder what to do/say. I’ve literally had friends say, I didn’t know who to say, so I didn’t say anything. While no relationship is exactly the same as another, I can say pretty definitively that this is the wrong choice.
When you know better, you can do better. And we all need the support of those around us when in crisis, especially when that crisis is for the rest of our lives in one way or another.