Chronic Illness is Destroying my Marriage: Strategies for Healing

By now, I can tell you that even if hydroxychloroquine was a cure for Covid-19, no one would want to take it because among the many side effects are nausea, vivid nightmares, and your ears ringing without stopping Baby Driver style. Unlike Dr. House, who can find a diagnosis for the most intractable of patients, a team of skilled specialists can’t manifest an explanation for something that is still being actively researched. That there isn’t always an answer for “What’s wrong with me?” That sometimes there is no cure.

I would love to tell you that I’ve come to accept this all with grace, and the journey has made me stronger, but that would be bullshit. Truthfully, for the past year, I’ve railed against fate and flip-flopped between hoping that it all will just magically disappear and hoping I won’t wake up in the morning. I climbed into a depression cave and hibernated for months there, disassociating myself from the reality that I had no control over what was happening to my body and that I would have to cope with it for the rest of my life. I gave up on caring about myself entirely.

It was my husband who picked up the slack. He cooked, made sure I ate, checked in with me constantly, pestered me into taking walks and getting out of bed, conscripted my friends to reach out to me, drove me to many, many doctor and specialist appointments, helped me track my symptoms and medications, and assured me he would love me forever every time I wailed he should just divorce me and settle down with some nice woman with a functioning immune system. For nearly a year, he put up with me devolving from a life-partner to a lifeless lump. Tonight, my accusation of his unkindness is finally too much.

“I’m really sorry,” I say. Lately, all I’ve done is nothing and apologize for it.

My husband sighs. “I can’t do this forever.” He looks infinitely tired.

I want to say something, anything, to let him know how much he means to me, to acknowledge the huge amount of effort he’s put in.

“I’m sorry,” I say again.

He stands. “I don’t want to hear it.”

When he leaves, he shuts the bedroom door behind him like a concrete wall.

Compared to my epic meltdowns, it’s nothing. My husband has every right to be tired—all he’s done is take care of me. He more than deserves a break. Selfishly, all I can think is that at least he can take one. It’s the wrong attitude, this new self-centered despair that has driven my husband away, but I can’t seem to stop myself. I’m no longer the person he signed on for. I want to be me again, for us to be us again, but it seems impossible.

I don’t know what to do. Chronic illness is destroying my marriage.

After considering curling into a fetal position and crying until I can’t breathe, I crawl over to my phone. I’ve done a lot of crying, and so far, it hasn’t helped anything. All of my worst fears have come home to roost: having no control, being a burden, and now, losing the one person I love more than anyone in the entire world. I have to do something.

So, like any other problem or question, I google it.

how to be a good partner when you have an autoimmune disease

All the hits that come up are how to support your partner who has a chronic illness, not the other way around. What the hell. I just want a list: 5 Easy Ways Not to Be an Asshole When You Feel Like You’re Dying and Can’t Go On. 

After a few more minutes of frantic googling with different search terms, I go back to plan A. As I bring my knees to my chest and let the sob escape my throat, I wish there was a guide for all this.

Hint: there’s not.

Eventually, my husband reappears, picks me off the floor, and hugs me until both of us feel better. We crawl into bed, exhausted, and hope everything will be better in the morning.

It isn’t.

I see a neurologist and get an MRI and lumbar puncture. My brain is structurally normal, and there’s no inflammation in my CSF—nice to know, but it doesn’t explain why I’ve failed the short-term memory test. The neurologist suggests a psychiatrist to help control the brain fog, and a cardiologist to evaluate my heart. An EKG and echocardiogram later, I’m fitted with a heart monitor, which I wear to my psychiatry appointment. My SSRI is replaced with an SNRI. Follow-ups are scheduled. Blood tests show elevated ANA and low B12, and supplements are prescribed by my primary care physician. I can’t get in to see the rheumatologist for another three months.

If you’re curious about the happy ending to my marriage, it hasn’t happened yet. What does happen, though, is just like my husband; I finally get fed up with myself. I’m an all-or-nothing person, despite my best efforts, and it hits me all at once as we’re driving back from yet another appointment with no outcome.

“She didn’t even know about intrinsic factor,” my husband is ranting.

He’s read most of the scientific literature on autoimmune diseases in an effort to speed up a diagnosis.

I nod, exhausted from a litany of unknowns.

“I’ve never heard of that,” he mocks the specialist’s high-pitched voice. “She can’t read Wikipedia on B12 deficiency? I mean, god dammit, take some fucking pride in your work.”

“Yeah,” I say, getting into the spirit of things, “maybe confirm I have Sjogren’s before you suggest we just ‘try a chemotherapeutic and see what happens.’”

Suddenly I’m angry. “Like what the fuck,” I shout. “At this point, I know more about antibodies than she does!”

My husband grins. I grin back.

“What to get ice cream?” he says.

“Oh yeah.”

And I finally come to terms with the fact that no one can deal with this shit but me.

So, while I’m still waiting on my rheumatologist appointment, I figure I might as well write that article on how not to be an asshole when you’re (not yet) diagnosed with an autoimmune disease.

Your partner/friend/family/cashier is tired of hearing about it, and uncomfortable because they can’t do anything. It’s not that they don’t care. They feel powerless to help, and that’s as frustrating as it is exhausting. Find a support group if you can, and a counselor if you can, and complain at them. Write down how shitty everything is in a journal. Borrow your best friend’s parents’ firepit to burn a bunch of things until you feel marginally saner. Don’t hold it all in, but don’t only focus on being sick—that’s no good either. Try to pretend it’s not all you think about. With a little work, you can fool yourself and that’s one step closer to it coming true.

Between constant fatigue, the side effects of multiple medications, and depression as the cherry on top, I never wanted to do anything. This resulted in my husband feeling terribly alone, even as he had to take care of me. Even if it doesn’t sound like fun, I learned to say yes when he suggested a movie or activity. Often, I end up enjoying it more than I thought. And hey, if you’re really not going to enjoy anything either way, then you might as well make your partner happy. Don’t agree to hike Mt. Everest, but binge-watching a different Netflix series than the one you’d planned to won’t kill ya.

Wait, you mean don’t make decisions based on emotions and then choose that hill to die on? I’m not going to tell you I haven’t died on many poorly chosen hills. My corpses litter the mountainside. This depression metaphor is clearly past it, but seriously: your brain can trick you. When you find yourself thinking, how could they say that to me? Take a step back. Did they say it, or did you assume they meant something other than what they actually said? Don’t take offense when none is offered, as my mother still has to remind me.

This may seem obvious. But I can’t tell you how hard it was for me to learn that I can stop myself. While screaming at my husband, I’d suddenly realize I didn’t even know why I was yelling, but be stuck in the moment, worried about how to change gear without backtracking or invalidating my feelings.

Here’s the secret: stop. Immediately. Mid-sentence. Mid-word even. Stop, take a deep breath, and say, “I’m sorry, I’m being an asshole.” You’d be amazed how far admitting that goes. Don’t go overboard and spiral into calling yourself a terrible person; making your partner reassure you doesn’t help. Just a simple apology can work wonders. You are allowed to be miserable, exhausted, terrified, and pissed off about all of that. But you are not allowed to take it out on other people. So grab some flammable objects, and go back to step 1 (burning things).

To summarize: do the best you can, apologize when you don’t, and burn out your feelings, not those around you. And please, if you’re in possession of the secret guide on how to manage all this, stop holding out on us and publish it on the internet.