Chronic illness is ruining my relationship
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Chronic illness is ruining my relationship
Confession, depression, and autoimmune suppression: a personal essay by Anne Jones on the difficulties of maintaining a relationship when faced with a chronic illness diagnosis.
Chronic illness is ruining my relationship
“Why can’t you just be nice to me!” I wail at my husband.
He’s lying next to me on our bedroom carpet as I melt down for the umpteenth time.
“A.,” he says, his voice suddenly serious. “It’s not possible to be nicer to you.”
All traces of sympathy are gone.
I bury my face in my hands because I know he’s right. My husband has been unfailingly patient and kind, accompanying me to doctor’s appointments, staying up all night when I can’t sleep because I’m terrified everything will be this terrible forever. He’s spent whole days lying next to me in bed, reading me funny Reddit posts until I give in and laugh. He encourages me and tells me I’m doing great when it’s all I can manage to eat breakfast before the fatigue hits like a Mack Truck and my body shuts down for an involuntary nap.
Being bed-ridden, huh-ed at by specialists, and devolving into a sentient lump is bad enough. But worst of all, aside from the inconclusive diagnosis and the inexplicable symptoms and the not-knowing if my kidneys/liver/heart will just up and fail on me is this: my autoimmune disease is destroying my husband too. We used to be partners. But now our rock-solid marriage feels more like all those other relationships we arrogantly made fun of; we can’t even have a normal conversation.
When the rheumatologist first told me I might have Sjogren’s Syndrome, I felt like I was on an episode of House M.D. I sat blankly in a chair as he explained the implications. At that point, my face was so swollen I looked like a toad, and I could barely muster the energy to stay awake for more than a few hours each day. A fog had descended on my brain and I couldn’t process simple decisions, much less remember things. Tiny pinpricks of red dotted my face, chest, and arms, but the vasculitis wasn’t dengue fever from travel—my immune system was attacking my blood vessels, causing them to leak.
“It’s possible to live a normal life,” the rheumatologist was saying. “Venus Williams has Sjogren’s.”
He and my husband began to discuss possible procedures and treatments: a salivary gland biopsy to support the Schirmer’s test, a lumbar puncture to rule out inflammation in the cerebral-spinal fluid, steroids or chemotherapeutics to suppress my immune system.
“But I don’t want to play tennis!” I burst out.
The rheumatologist looked at me strangely.
My husband took my hand. “I know,” he said.
And thus began our freefall down the autoimmune disease slip n’ slide.
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. That 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 disappears 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 it 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.
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.
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, 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 the 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.
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.
How to be a good partner when you’re the one with a chronic illness
Don’t only talk about being sick.
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.
Do what you can when you can
Sometimes, loading the dishwasher is beyond your capability. That’s okay. But if you just don’t feel like doing it, that’s the time to do it anyway. Again, proving to yourself that you can do something even when you think you might not be up to it is empowering. And it’s not bad to show your partner/family that you’re doing what you can. Don’t overdo it and make yourself sick(er), but push yourself, even just a little. Success feels good.
Say yes even if you don’t want to
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.
Don’t believe everything you think
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 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.
Stop being an asshole the second you notice.
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.
When they couldn't find the answers on Google, A. L. Jones decided to help out by writing authentic essays on living with chronic illness (and trying not to be a jerk about it).