The American healthcare system is notorious for failing to meet basic standards for care and healing. Often it's up to us, as partners, to provide care for our loved ones when national or private systems drop the ball. According to a joint study conducted by the National Alliance for Caregiving and the AARP in 2015, an estimated 43.5 million adults in the US have provided unpaid care to an adult or child in the last year; nearly a quarter of caregivers are millennials.
So what happens when our lover or close friend becomes our primary caretaker or vice versa? How does illness shift, reinforce, or overturn a relationship's health? For this month's installment of The Talk, I dined with performance artist and writer Christen Clifford, culture writer Moira Donegan, holistic teacher and life coach Rob Kancler, and artist Julieta Cardenas to diagnose love in sickness and in health.
Ana: Relationships—lasting ones, at least—are dynamic; they withstand and adapt to the changes that make up a life. Inevitably, our bodies will fail us. The bodies we love also fail. I want to talk about how our romantic and physical relationships fare when we are in either position—when we care for a loved one, or when we need to be cared for.
Christen: Well, I have cancer! [Laughs] I was diagnosed with ovarian and uterine cancer in March. I did three rounds of really toxic chemo and had a big ol' hysterectomy. Chemo is absolutely disgusting; it's horrible. I was shocked by a lot of the things that happened to me: how I thought about my sexuality, and how I thought about being literally de-sexed. My sex drive is very low, and I am undergoing surgical menopause. My partner had to do everything. We are very strong life partners; we're married and have two kids. And it was still hard to let him take care of me.
Rob: I am curious—if he'd grudgingly served you, would that have made it easier for you?
Christen: I don't know, maybe. Because then I could just say, "Fine, you have to do this, we can hate each other, and that's it."
Rob: Rather than to open your heart and let it in totally?
Christen: Right, because it's hard for me to be so vulnerable. It was very scary to try to have an orgasm for the first time. It took a long time, and I was upset. Even before the surgery, I had to stop on the sidewalk and cross my legs before I sneezed so that I wouldn't pee. And that's worse now. Not so sexy.
Ana: How do you work through this new not-so-sexy feeling?
Christen: I have no idea, because I am living it. I am not dealing with it very well. I hate being incapacitated, I hate not having a sex drive like I used to, and I hate feeling like I have to deal with my head before I can relax in bed. Right now, we aren't having sex. I don't feel sexy or sexual. He wants to please me, and I just can't. It just seems like too much. I just make jokes about leaving him alone, so he can get off. I try to have a sense of humor about it.
Ana: You have to. I haven't yet had any intense medical situations in my life or around me, to the point to where I almost take that for granted a little bit. I grew up in a household where that support always came from my family. I never had to question where it would come from. Sometimes I wonder if I will be able to care for someone when it's time? But I also regret that this is a burden we all have to pick up. Our relationships become this catchall for all these other services the government refuses to worry about. That does bleed into our sex lives and how we relate to our partners and what we dream is possible. I think a lot of the reason why monogamy is the default for many people is because that has become the system people expect care from. You have a partner and children who will literally care for you when you die.
Rob: I think it's important to have a really diverse support system—that provides many different ways to meet essential needs. It's dangerous to assume one person as our only source for meeting our needs. I think being radically self-reliant is important, but so is being honest and conscientious about the ways that we need to seek support from others, and then finding those people that love the prospect of offering us what we need.
Ana: That's the key, finding people whose own needs are met by helping you meet yours.
Rob: I find that there are certain kinds of support that make more sense to get from certain people than others. It makes more sense to seek certain kinds of support from stable mature friends than to seek it from the people I have sex with.
I was disgusted, and then disgusted with myself for being disgusted. But I also remember thinking, This is what love is. —Moira Donegan
Ana: Has anyone had an instance where that support hasn't panned out, when a partner has thought differently about you after having to care for you?
Julieta: About a month ago, I made my second suicide attempt. I've been diagnosed as bipolar, and my diagnosis really affected my relationship. My boyfriend had a really hard time with this episode. He came to visit every day, but the day I got out of the hospital, he broke up with me and flew back to the UK, where he is from. I was, of course, really upset that my relationship ended, but I also see how hard it for someone to care for you when you are in the throes of a suicidal episode.
Ana: When did you first tell him about your diagnosis?
Julieta: Three months into the relationship. When I told him I was bipolar and warned him that it could get really bad, he told me not to worry—he would never leave because of that. In the end, he said the infatuation he felt toward me was gone. I was "weaker" than what he had expected.
Christen: I've never heard anyone talk about suicide this way. It must be very scary.
Ana: And the thing is, you won't be able to get through this alone.
Julieta: Right, that's the thing: I need a partner. The people who I've talked to who have my diagnosis and have lived long lives all have partners who are there for them when they can't do anything—when they are breaking everything and screaming. I don't have that right now. My friends call me daily to make sure I am well. They'll ask me if I want them to come over, and if I do need that, they'll be right over. That's solid.
Ana: That is. Have any of you guys been the ones to offer care?
Moira: I was in a long, life-structuring relationship with an addict. He often couldn't sleep through the night without vomiting, and sometimes he vomited without waking up and I had to make sure that he was OK, that he hadn't choked. That part was frightening. A few times I just pulled the sheets out from under him and would be standing at the washing machine at 4 AM, pouring the detergent while he was still asleep in the next room, oblivious. It was a weird moment of knowing a little more about how vulnerable someone is than they did. I think this must happen a lot to the partners of sick people, this impulse to conceal or withhold information from your partner about just how sick they really are. In part, it's out of kindness: It's humiliating to have that little control over your own body, and you want to spare them that. But there's also another side of it that's more complicated. I'm not proud of this, but I think that the vulnerability of his addiction made the relationship seem more precious to me, because it was so precarious, so contingent on him continuing to get lucky and not overdose or choke on his vomit. I think I valued him a little more when he was under the shadow of this thing that could take him away.
Ana: Did you ever resent having to clean up and care after him?
Moira: Of course I resented it! I was pretty disgusted, and then disgusted with myself for being disgusted. But I also remember thinking, This is what love is. There was certainly an element of understanding myself as a martyr, but also I just really valued my frank love of this person, even the ugly parts of him. There's a way that it feels really special and privileged to be trusted with someone's physical vulnerability. Of course that happens with sex, too, but it's much more intimate with illness, I think.