Chronic Illness & the Space Between Us

Photos: Holly Hursley

No one tells you that you won’t sleep.

When you fall in love with someone that has chronic illness, people don’t tell you that you will spend countless nights awake. A loud noise will wake your partner up. Their body will keep them up. Their restlessness will wake you up. The existential dread of how terrible both of your moods are going to be in the morning will keep you up too.

Nothing you say can make them feel better, though you desperately want them to. Or rather, you’ve already said the things that might make them feel better so many times that those words seem like unintelligible, irrelevant mush. You bicker, not because you both are angry (well, your partner is definitely angry, not necessarily at you), but because you’re both frustrated. Because you’re both tired. You wish they didn’t let themselves get so angry (“It’ll only make it harder for you to sleep.”) They wish you could feel what it’s like to live in their body (“Am I not allowed to be angry?”). Then you both are quiet, because one thing’s for sure: arguing is not sleeping.

You find yourself listening for their deep breaths. The longer you don’t hear the sounds, the more anxious you get about the day ahead. “We’ll both be so cranky.” “We won’t be able to focus.” “Do I have melatonin hiding in a travel bag somewhere?” “Should we take it at 4 am?” “Is it worth turning on all the lights to try to find?”

You play rain sounds on your phone for ambient noise, then remember that Arianna Huffington says electronic light is bad for your sleep cycle. Your partner rolls over, and you wonder if you’ve disturbed them, then you think it’s not so bad because they’ve disturbed you, and then you remember your empathy again.

You don’t know what it feels like to live in your partner’s body. A patchwork of descriptions in conversation, observed body movements, and Google searches give you a vague idea. The majority of the time you don’t notice that anything at all is wrong with them, so you let yourself forget. You Google medication side effects and holistic treatments. One of those searches tells you that 50 million people feel pain in their bodies day in and day out. Between those people and their potential partners, how could nearly a third of Americans not be sleeping well? Not counting the wailing babies or the late night drinkers or people without warm beds or medical students on call or the migrants traveling by night or….

Now they are all in your bed with you, it feels like, between you and your partner. Sometimes it feels better to imagine a world where most people are getting shitty sleep just like you. This is real life, isn’t it? Like taking care of elderly parents and saving for taxes. The things that never make it to social media, that barely make it into polite conversation.

Sometimes you commit to the circumstance, and you find yourself thinking ridiculous things like “It’s ok if I never have a full night’s sleep again.” You tidy the apartment or you pick up your work for the (next) day. You type out your thoughts in an effort to tether your restless mind back to a world that will soon begin to call for you again.

No one tells you about all the sleepless nights. Maybe they forget to mention it after all the graduations and mitzfahs and beautiful sunsets and close hugs. I understand that, because it seems malicious to bring it up alongside all the genuine big and small love. But sleepless nights are there, between midnight and morning, between my partner and me.