Welcome to “How to Go to the Doctor,” our twice-monthly advice column by teacher and architectural writer Eva Hagberg Fisher, a distillation of eight years of going to every conceivable kind of doctor following an incorrect diagnosis of intracranial germinoma, idiopathic chronic fatigue syndrome, and anxiety; and correct diagnosis with an intracranial Rathke’s ceft cyst, ovarian dermoid, and mast cell activation syndrome.
Dear Eva, I have a friend who was just diagnosed with a terrible illness and I’m really struggling with how to be a friend. Our conversations always begin with me asking “how are you?” Not only do I typically NOT get the answer of how she’s doing (the answer I was looking for), I get a sense that she’s annoyed by me asking.
Our friendship is feeling more strained than ever because every time I see her I think my questions are irrelevant or cause her to talk about stuff she doesn’t want to discuss.
I want to be a good listener and to help my friend with the pain and stress this must be causing her, but I don’t know how to read between the lines of her vague answers when I ask how she’s doing. Is there a better question I can ask besides “how are you?”
I don’t want to pry. Please help!
I’m so sorry to hear about your friend. I hope that she finds moments of peace in whatever storm she’s in. I hope that she feels clarity, and that she feels encouraged. And I hope that she feels your friendship, in all its forms.
Before I became the sick friend, I was a terrible sick friend. In my early twenties, when I was living in New York, I had a friend who’d just been diagnosed with cancer a third time, after a few other unbelievable medical events. I know that I visited her in the hospital once, but I remember being super Freaked Out To Be In a Hospital (and probably needed her to know that I Didn’t Really Like Hospitals), and I also remember feeling like it was a HUGE drag to take the A train all the way uptown to where she was. Like I was really busy doing other stuff…
I avoided my sick friends because I had no idea what to say to them. I had no idea that my discomfort with hospitals is pretty much EVERYONE’s discomfort with illness and mortality. All I’d been taught were the platitudes this American culture of repression and fear teaches us, and I am here to try and fight a little bit against those platitudes, or at least to gently offer some alternatives.
I avoided my sick friends because I had no roadmap for how to be a friend to someone who’s young and sick. Because we just don’t teach how to just be with someone, rather than try and improve them or fix them or alter their experience in some way. So I’m so glad that you reached out, because I think I have some helpful experience to offer now that I’ve been a sick friend for quite some time.
The first thing I have to remember is that every person is a rainbow—and so is every disease. So I would suggest you start off every conversation from a place of knowing that you know nothing about your friend, her illness, her diagnosis, or how it makes her body feel. When I was briefly—erroneously—diagnosed with ovarian cancer a year or so ago, I told a professor that I might have a hard time keeping up in the class because we weren’t sure what was going to happen. “My father had pancreatic cancer!” she said, “So I know how important it is to Have a Normal Life.”
She meant well but … it was a totally different kind of cancer and while I’m so glad that he found solace in Having a Normal Life, for me, one of the singular upsides of this experience is that I have basically given myself a Get Out of Normal Life Free card. The last thing I want after this experience is to Have a Normal Life. It’s not normal to walk around with a chunk of your brain missing. So why pretend it ever could be?
I would also start by taking care of your own needs and seeing what they really are. Is your curiosity because you are in medical school and you happen to be studying the rare illness that you think she has? Is it because you’re writing a book about weird diagnoses and you want to use her as a research subject? (These are both totally legit—they are also just about the only legit reasons for you to be curious.) Or are you feeling like your wants are needs? Do you want to be reassured that she’ll be okay? Do you want to know that she won’t have to suffer? Do you want to know so much so that you feel like you’re in control?
Step One of Friending a Sick Person.
Read the Room
Is your friend currently inpatient hospitalized? Is she at home recovering from a surgery? Is she at home, feeling fine, but waiting for a surgery that’s going to rock her world? Are you at the doctors’ office with her and she just got some news that neither of you know how to handle?
When I was inpatient hospitalized the first time, the best visitors that I had were ones who just came and did whatever they were going to do, and did it next to me. I was moderately brain damaged but didn’t know how moderately brain damaged I was, so any attempts to be normal felt profoundly stressful for me because they brought home how bad my memory was and how I couldn’t stand up. One friend came to visit, dropped off some Us Weeklys, and then start telling me about her love life while I “lay down to rest my eyes.” I completely passed out ten minutes after she started talking, and at some point she realized that her audience was absent and quietly slipped out, but I remember it as an ideal visit—I didn’t have to do anything but lie there and make myself comfortable.
If your friend is at home recovering from surgery, I’d start by asking how her body feels that day. Not necessarily how her pain is—pain is so diffuse and hard to explain that even if we both know what a “7” feels like for each of us, does that information really transfer? “How’s your body feeling today?” is a great start. And then, follow her lead. If she wants to talk about the surgery, she’ll probably start telling you about how her body feels fine but the stupid radial arterial line bruised half her arm and really hurts and isn’t it cool they put in a radial arterial line but she’s still kinda nauseated from the gas. Whatever she tells you—roll with it.
If she’s waiting for a surgery, I would ask point blank: “Do you want to talk about the upcoming surgery?” She might find comfort in telling and re-telling what’s going to happen—before my brain surgery, I drew maps of my pituitary with leftover Ethiopian food/on restaurant napkins/in the grass/on my hand because I was in such shock that all I could do was talk about it again and again and again. Or she might not want to talk about it at all. My last surgery, another potentially-cancer-related biopsy, which happened last week, feels like a weird black hole and the last thing I want to do is talk about what they did to my breast. You can also keep checking in with her, with something like. “I really want to know more about the anesthesia—do you mind telling me?”
If you’re in the doctors’ office and she’s just gotten some news, follow her lead. If she suddenly starts talking to you about what’s-the-deal-with-Tinder-anyway, show her what’s-the-deal-with-Tinder-anyway. If she falls down in the hallway and cries and says she never wants to get in another MRI tube ever again, sit down next to her and say that it’s okay, and she doesn’t have to stop crying. If she immediately gets on her phone and Googles every possible outcome from what the doctor said she “might” have, Google with her. The point is to meet her where she is. And yes—I’ve done all of those.
Unstraining the Friendship
Why does it feel strained? Because you feel like you’re annoying her? Or because your friendship isn’t what it used to be? Did you become friends because you both loved long walks and now she’s in bed all the time? Is it confusing to you that you thought she was fine and now she’s getting another treatment, or another diagnosis? Is it strained because you want to talk to her about all of your problems but you don’t want to burden her because it’s “nothing compared to what you have going on”?
A very, very brilliant and wise friend, who also introduced me to the power of matching t-shirts during surgery, taught me that friendships change and morph. That sometimes you’re both doing fourteen handstands in a row, and sometimes you’re both in separate beds in separate apartments clicking next on whatever Netflix and chill you’re watching. Are you annoyed and feeling strained because you’re mourning something that you thought you had? I would be. I remember when I realized that my friend Melanie was never going to go to J. Crew and buy matching shirts with me again, because she was really about to die this time. And I wanted her to just stop being annoying and be able to get this metastasized breast cancer out of her brain. But she couldn’t. So we reframed, and I just sat next to her, and it was awkward as fuck, and I was extremely worried about my behavior; the thing is it wasn’t about me.
I would say that anything that’s your experience is totally fair game to talk about, and anything that you might be guessing about your friend’s experience needs another look, and a few breaths. You may have experience with all the diseases in all the land, but you aren’t in her body, with her particular molecular history, experiencing hers. And so your job as a friend is to gently shepherd her through this experience that only she can live through, but that you can walk next to. To follow her lead and her cues.
Basic Dos and Don’ts
DO talk about your own life and your own experiences.
DON’T preface it with “this is nothing compared to what you’re going on”—suffering is suffering. I’d way rather go through four more surgeries than have to experience another breakup.
DO ask if there’s anything you can to do help, and be specific. Do offer to bring food, to clean her house, to do her dishes.
DON’T say “get in touch if there’s anything you need.” I didn’t understand this until I understood this, but sometimes the phone weighs 10,000 pounds and it’s really hard to initiate contact.
DO ask if she’s in the mood to answer questions – and then choose your questions carefully.
DON’T suddenly respond to a piece of information with a million follow-up questions because you don’t know what else to do.
DO reassure her that you’re her friend and you’re not going anywhere.
DON’T tell her everything’s going to be okay. Unless you are literally the Eleventh Doctor and have seen the future. If you ARE the Eleventh Doctor, hello sweetie.
DO try and understand the specifics of her experience the best she’ll let you.
DON’T reflexively think of the four other people you knew with this disease and tell her all about their prognoses and how three of them died but one of them’s a miracle because he put coffee up his butt and drank kale juice and Big Pharma is a lie and chemotherapy is poison!
DO keep what you would do in this situation out of it. Maybe you’d stop eating sugar. Maybe you’d get a second opinion. Maybe you’d opt for breast-conserving surgery and radiation instead of the mastectomy your friend has chosen. Your friend has her own path. She has her own decisions.
DON’T make helpful suggestions based on something you read or heard.
DO remind your friend that we live in the present.
DON’T ask “are you ok?” or “are you going to be okay?” Your friend is never okay. No one is ever okay when they get a diagnosis, of any kind, of any sort.
Being friends with a sick person can take a lot of weird, sideways, hard work. The work isn’t in showing up in the rain, and schlepping food around, and waiting long nights at the hospital. The work is that you’re going to have to get comfortable with uncertainty, because that’s the world your friend lives in now. No matter how clear a prognosis might seem, the human body is a fickle, wild, gorgeous beast. Your job now is to look inside yourself for all your own fears, your own wants, your own desires that you might begin to project upon your friend, and to shut that movie theater down, or send it off to play with someone else. The deeper you go into your own soul, the more you question what you’re doing and show up for her with as much awareness and presences as you can, the deeper you’ll be able to go with your friend, and once you’re together that far, nothing is annoying, and nothing can be strained.