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Thursday, July 24, 2014

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In Sickness and in Health, But Mostly in Sickness

| |I have been sick for most of my life. This is both incredibly simple and incredibly complicated. Here is the short version: my immune system does not know how to protect me. My body attacks itself and I become inflamed. I am always in some type of pain.

I was 14 when I was diagnosed with Crohn’s disease, an inflammatory bowel disease with no known cure. Countless medications, several surgeries, a handful boyfriends, and a few periods of remission later, I was unexpectedly thrust into a new kind of sickness. At 27, without warning, I experienced crippling lower back and hip pain. After months of failed treatments and tests, I was diagnosed with Ankylosing Spondylitis, a type of autoimmune spinal arthritis common in people with bowel diseases. From then on, my fate as a very slow-moving person in constant need of a restroom was sealed. I cope with my disabilities by perpetuating two possibly false facts: one, that there is humor in illness; two, that one day I will no longer be ill. I have learned that while there is no appropriate time to tell someone that your spine would love nothing more than to fuse with your pelvis, there is definitely a joke in there somewhere.

Before I fell indefinitely ill, I experienced two blissful years of love as a healthy person. Derek kissed me in the music closet on Valentine’s Day in sixth grade. Marcus told me I was beautiful and held my hand at a winter dance. There was a sordid encounter during a matinee screening of Titanic with a boy from another school.

After nearly 15 years of practice, I can assure you that there is a specific look reserved for the moment someone realizes you are fragile. I used to prep prospective partners for this when first dating them. “I have this illness,” I’d explain. “I may look okay now. This is the fun part. We are drinking gin and laughing and my hair smells nice and we’re telling each other our greatest hits stories but one day I will inevitably drop off the radar or my medication will fail. I’ll find myself in need of a gastroenterologist, a rheumatologist, and a steady hand.” My hair does not smell nice at the hospital. They do not serve gin there, but most of the time there’s morphine.

Men my age, single men, have not mastered the art of concealing their reactions when faced with the prospect of a breakable me. It’s more delicate than horror, slight enough that I’ve had to see it again and again to notice. And even then only after looking backwards to figure out what went wrong. 

I’m not sure how or when men learn to comfort. I did not grow up being comforted by a father. I was raised by women. To compensate for this, I’ve had a long history of dating men whose arms I could collapse into. When you are buried in someone’s chest you cannot see fear spread across their face. Scared men have held my hand in hospital rooms. They have walked me and my IV pole down endless fluorescent hallways. They have reached out towards me through MRI machines and sat next to me while I’ve been infused with all sorts of potions that haven’t quite worked yet. They have listened through bathroom doors and pulled over on highways.

At different points, those men fell away. One couldn’t bear to make the hour-long drive to the hospital, opting instead to sleep with a much healthier college classmate as I recovered from surgery one winter. One explained that I was “too much, all at once,” which may, in fact, be true of my overall personality, but also particularly descriptive of his alcoholism and general air of resentment. One suggested I call a cab to take me to the emergency room as he was busy at the time. I phoned my parents instead.

By the time I met Jacob I was exhausted from years of apologizing for being a burden. One of our first dates was spent in the infusion wing of the University of Washington Medical Center, him snacking on complementary saltines and keeping me occupied as I received large bloody looking doses of iron through an IV. Sitting side by side in vinyl recliners, surrounded by nurses and sleeping patients, we spoke like any couple in the beginning stages of a romance. We could have been anywhere at all.

Two people rarely enter into a relationship knowing that one of them will be chronically ill. That comes later. Years in. After longer, more serious commitments have been made. So often, “I love you” carries with it a list of requests: do not leave, do not reject me. How do you ask someone to love you in sickness and in health but mostly in sickness? I’ve found that it’s not about them bringing you flowers two months in. Will that person gently hold your parents’ hands as they wait for you to come out of surgery? Will they kiss the fresh scar that runs the length of your torso? The most important thing is endurance.

Jacob enters into each new challenge with such blind optimism that I never realized what a cynic I was until we lived together. The man was born to make the best of it. When high doses of steroids like Prednisone render me ravenous and unable to sleep, we take advantage of early morning breakfasts and new energy for household projects. When flare-ups make leaving the house unbearable, we are indoor people. He is my partner on the couch with our dog between us and matching Apple devices on our laps. When I had over a foot of my digestive tract removed last March, Jacob reveled in ordering a la carte from the hospital menu and watching marathons of our favorite television shows as I provided pain medication-fueled commentary from my bed.

It was not always like this. The first time I got sick, really sick, while Jacob and I were together, he was surprised that I didn’t look ill. Many people who struggle with chronic illness will explain how agonizing it is to regularly be told, “Well, you don’t look sick!” With the exception of a limp that comes and goes and steroid-induced moon face, my disabilities are outwardly invisible. Barring the breakdown of society as we know it, this genetic casserole of autoimmune disease I’ve been handed will probably not kill me. I have a superior support system, health insurance and time. Jacob and I are co-conspirators in managing my illnesses. After years of practice, he can read the look of otherwise imperceptible pain on my face just as I can sense his eyes on me from across the room, or the weight of his hand on the small of my back.

Flannery O’Connor, who died of complications from Lupus at the age of 39, described sickness as a place where “nobody can follow.” Chronic illness is isolation. My brain will focus on the smallest things during a night spent in the bathroom or lying in bed with a heating pad, hoping for my medication to kick in. A single line of a pop song will play over and over in my head as Jacob snores next to me in the dark.

Recently, I was hospitalized for a lung infection most likely brought on by the combination of immunosuppressant drugs I take. Jacob drove me to the emergency room after he arrived home to me struggling for air with our tiny dog making worried circles around my ankles. We spent the next few days in a holding pattern that has become all-too familiar, with him and my parents trading shifts while a team of doctors struggle to figure out what, exactly, can be done about me this time. So far, my immune system is a stubborn mystery and, as usual, I was prescribed a new set of drugs with no real explanation of what landed me there in the first place. Jacob as always, is cautiously optimistic, but I’ve been traveling alone in this body of mine long enough to know better.

Chronic illness is what happens when you’re busy making other plans. At some point, you learn to adjust. Before my last hospitalization we had arranged for a weekend away on the Oregon Coast to celebrate our anniversary. “It doesn’t matter if you’re not feeling well,” Jacob explained as we walked from one end of the hospital floor to the other, both of our hands steadying my IV pole, “we’ll build a fire, sleep in. It’ll be easy.”

Three weeks later, he asked me to marry him on a beach in Oregon in the pouring rain.

 

Previously: What We Have Going for Us

Photo via dougtone/flickr.

Drew Zandonella-Stannard has been writing about the Internet on the Internet since 2002. She lives in Seattle and thinks you're swell.



22 Comments / Post A Comment

lalalaloveyou

I have a chronic illness as well. Mine is a primary immunodeficiency, called common variable immunodeficiency (trying saying that three times fast). Just wanted to say thanks for this piece, hang in there!, and congratulations! :)

808078099@twitter

@lalalaloveyou I'm a CVID patient as well, and I also have intrinsic (non-allergic) asthma and endometriosis. I was diagnosed with CVID at age 5, so "being sick" was basically my default state until I started IVIG infusions when I was in junior high school.

I relate to this article so much; I often tell people that the main reason I fell in love with my husband was because he was the first guy who didn't visibly move away from me when I told him about my condition. He also didn't ask stupid questions, like "I'm not gonna catch it, am I?" He thinks being the son of a doctor helped him be less intimidated; but he also suffered chronic kidney infections and had two major surgeries to correct a urinary tract defect as a child, so he has some understanding of what it is like to be chronically ill.

We have been married 20 years this year, and he is my rock. He's held my hand and kept me calm during trips to the ER. He's handled all the cooking and household chores when I was too sick to get out of bed. He's held me and let me cry into his chest when I was losing my mind over fighting with my insurance company. When I was overwhelmed by the burdens of chronic illness and ready to just give up, he talked me off the ledge and reminded me how even just watching the sun rise can make life was worth living. He's nursed me through three surgeries, assuring me I was beautiful and loved even when I was throwing up, groggy and grouchy from anesthesia.

I don't know what I did to deserve a man with a heart of gold, in fact I am not sure that I do deserve him. But I am grateful every day and in every way that he is in my life.

This is a beautiful piece. I especially love the Flannery O'Connor quote (so true) and describing the way your brain plays the same words and songs over and over on long, dark, painful nights while your honey sleeps blissfully next to you....yep. Been there too. :)

Congratulations, Drew, and many many blessings.

lalalaloveyou

@808078099@twitter Thanks for sharing! I'm so glad you found a good partner :)

Jill_Tata

ooh damn didnt expect that@k

Erryoudite

This was lovely. I've slowly come to the conclusion that life, at least my life and probably yours, is a two-person job.

queenhobart

I have/had Ulcerative Colitis (does it count if your colon is removed?) for about 6 years before my colectomy, and have been lucky enough that it hasn't come back. But I know it could. I also have level 4 endometriosis and what I've been told is sciatica (though now I'm interested to look into this Ankylosing Spondylitis business, because sciatica was the Dr.'s 'shrug, here's some painkillers' diagnosis)

Thanks so much for this piece. I'm glad you have someone to share this experience with. On the whole, I agree with Flannery. My favorite of her illness quotes is "“I have never been anywhere but sick". And I frequently, even though I am mostly better now , feel that kind of isolation.
But at the same time, I can't imagine how much worse it would be if I didn't have my husband. He's washed shitty jeans for me, he's taken me on IV stand walks, he's humored me when my emotions were totally prednisone unhinged, he's dressed me in the hospital and cooked for me and read to me when I was in too much pain for the morphine to manage.
No one can follow you into sickness, but god it's good to have someone try.

Thanks so much for this piece. It's great to hear about other sick folks living their best out there. I really hope you find a treatment that works better for you.

Andrea Cypress Straw@facebook

You have no idea how much I relate to this. I have Celiac disease and hip/spinal arthritis along with a host of other issues. It surfaced in my 20's, and got really bad while I was in a long term relationship. He was an ass to me about it much of the time, calling me "Princess" when I was too sick to get off the couch to clean the house, and rarely offering to help me carry things or offer any real support. For some odd reason, I married him, but we are now divorced. And now I have found a real, supportive partner! And I'm so glad you did too!
Also, I wanted to tell you that there are alternative treatments for conditions like ours that really, truly work. I drastically improved my condition with just nutrition and chiropractic care, after nearly a decade of suffering, and getting to the point where I could barely walk or use my hands. Look into the autoimmune research of Dr. Wahls and Datis Kharrazian. Find a practitioner off of this website: thyroidbook dot com, and get this book asap:
Digestive Health with REAL Food: A Practical Guide to an Anti-Inflammatory, Nutrient Dense Diet for IBS & Other Digestive Issues by Aglaée Jacob M.S. R.D.
All the best in health to you!

Andrea Wyckoff@facebook

I can so relate too! I have advanced Ankylosing Spondylitis (with a mostly fused "bamboo spine") and Colitis. My husband is my rock!

Last week I tried out an alternative pain/massage therapy called ROLFing - the next 3 days I was bed ridden, it flared up my back and rib cage so bad, Holy Hell! So I had to miss our friend's big music fest we go to every year! But a few days later after I snapped out of it, my husband and I blew off the whole day and took the long scenic route to the Oregon Coast, via old graveled logging roads, and picked wild hucklberries and thimble berries the whole way. We took our 3 dogs, explored hidden lakes, ate more wild berries, arrived at the most beautiful lookout, then ate dinner in Pacific City. (I am doing a full blog post too with pix this week - as I blog anti-inflammatory recipes).

But anyhow, we do have so much in common! And I will always treasure that day. After having to miss out joining my friends earlier that week for the big annual party, at least my husband was there to take me on our own adventure when I was well enough for it!

Take care love!!

xoxo

14194335@twitter

my beloved suffers from ankylosing spondilitis as well. he hasn't had very severe flare-ups in the time we've been together, but i do worry about him...

regardless, thank you for sharing your story.

grapefruit

This is beautiful, and so reassuring to read. I don't think what I have now will last forever, but I've been dealing with chronic, debilitating pain for the last four months, and I know the soonest I can be back to normal is another six months; the longest is never. I know I'm lucky in that this probably has an end-date, but it is so exhausting and isolating, and makes me so grateful for the people in my life who have helped me.

Camille Morse Nicholson@facebook

My dad has had juvenile arthritis, and has ankylosing spondylitis and rheumatoid. My mom has reactive and rheumatoid. As do I. We all manage it with indomethacin and enbrel, with varying success. So many people tell me "you don't look like you have arthritis!" and it is hard to convey that I look fine, but my immune system is not. Thanks for writing about this, it made me feel a little less medically isolated.

7907652@twitter

As someone with Cystic Fibrosis, I really related to this. Thanks for writing.

dreeski

Having support when you are dealing with autoimmune disease is so important and precious. When my husband and I were dating, I was just starting to deal with hemiplegic migraines. One marriage, three pre-eclamptic pregnancies and a miscarriage later, I was diagnosed with antiphospholipid syndrome. Then came Reynaud's phenomenon and celiac disease. Right now, I'm getting tested for Hashimoto's and I get screened for lupus every four months. My husband has been there for every blood test, every hospital stay, every CT and surgery and MRI. He's learned and grown with me. He used to get irritated when I had flareups, and that made me angry, until I realized his irritation was related to his fear and frustration at not being able to help me. Now, he looks for gluten free recipes and tries to recreate my favorite meals. He keeps extra blankets and gloves and socks and handwarmers in his car. He takes the kids out of the house when I just need to suffer by myself. I don't usually "look sick", and most people don't get it. But he does. And when I'm covered in bruises, he deals with the fact that people think he beats me. He takes care of me in so many little (and big) ways, and I don't know what I would do without him.

districter

This was really beautiful. I spent three days with my brother while he was in the hospital after his resection. We watched Bring it On and a lot of My Cat From Hell, in some kind of comedy tragic hang out session that will always stick with me.

Thanks for sharing.

tofuswalkman

this was beautiful to read, but hard to think about. keep fighting that good fight.

Mariajoseh

wow, "What We Have Going for Us" is one of my favorite pieces on The Hairpin ever, and I just read that it was yours too. This was also really good and beautiful and hard. Thanks for sharing-

Denise Nourse@facebook

This story was very moving. Several of my immediate family members struggle with various auto-immune disorders as well, though none are extremely serious for now, thank goodness.
I wanted to recommend some reading; please please read about Dr. Natasha Campbell McBride and her GAPS diet. There have been many people who have had their conditions and lives so much improved by cutting out processed foods and following her advice about pro-biotics and nutritionally dense foods - hearty soups with rich broths made from scratch. It really is amazing; a nephew of mine has had tremendous gains by eating this way. I wish you the best. Keep holding on to your amazing lifeline, your husband sounds amazing. :)

SarahSJE

Great piece. I was diagnosed with Rheumatoid Arthritis at 21, my father had renal failure since I was two and my mother had cancer when I was in my early 20's. This article hits home. Illness to me is something I've lived with/around my whole life. Taking care of someone who is ill with humour and kindness and as if they're just a regular person, as if hospitals and bags of blood and surgeries are just things that happen all the time to everybody and are perfectly normal is something I'm used to.

When I had knee surgery last year and had bad arthritis mornings I could see the fear and bewilderment in my ex's eyes. I was the sick one but I felt terrible for him not knowing how to handle it!

I've just started dating someone who's super optimistic and positive about life in general but I'm wondering how he'll deal with it if health wise things go south for me. When do you bring it up? Your second date sounds like it was a good way to test the waters :)

I'm glad you found someone who wasn't scared off by the uncertainty of how to help and congratulations on your engagement!

Thien

Wonderful! Thank you... Thanks for writing.

Nita Dozer Thatcher@facebook

I have Myalgic Encephalomyelitis, also known by the trivial name, Chronic Fatigue Syndrome. I've lived with it for 39 years. No cure, very few treatments, just lots of ignorance even within the medical community. Thank you for telling your story! You write beautifully!

james123

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Sanchit Gupta@facebook

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