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The Day I Told My Husband to Leave Me and My Lyme Disease

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On a summer afternoon in 2013, I lay in my bed staring up at the ceiling contemplating how to cut my losses while my life spiraled out of control. I felt as though there was an anchor attached to my soul pulling me deeper into an abyss of unfathomable despair. My thoughts drifted to an existence of solitude, and for a brief moment, relief washed over me. I had already become disconnected from most of my family and friends — an unforeseen casualty of a prolonged hardship. During a period of panic and uncertainty, I considered whether or not I should also cut ties with my husband, Tom. I fantasized about living the rest of my days — however long that would be — without the expectations of someone else. Furthermore, Tom never asked to be my caregiver, so letting him go seemed noble to me. Why should we both have to struggle when he could escape this never-ending nightmare?

We lived in an old, second-story Chicago apartment where watching new cracks form in the plaster became my daily entertainment. I crashed in 2010 and then again in 2012, leaving me stuck at home and in bed, intolerable to sound and unable to sleep. I took combinations of medications and supplements in amounts that could knock out a small elephant. But they often had little to no effect on me. My brain and spinal cord burned with pain; my muscles ached with exhaustion, and I could no longer sit or stand for more than a few minutes. Too weak to talk, I communicated with my mother in Minnesota through texts. Regrettably, I couldn’t bear the idea of hearing the sadness in her voice or the possibility of her seeing me in this condition. My body had given out on me, and I suddenly realized this mysterious ailment wasn’t going away on its own.

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Before my illness, I was an occupational therapist, an athlete, a pilates instructor, and the creator of a well-respected exercise DVD. Since I had carved out a unique niche in an up-and-coming health and wellness space, my career path looked bright and full of potential. Then, without warning, it all slipped away.  

The illness that derailed me in the prime of my life was chronic Lyme disease. Steeped in medical and political controversy, Lyme disease is an ostracized diagnosis. Physicians are taught that this disease is difficult to acquire and easy to treat. However, nothing could be farther from the truth. Lyme disease can affect every organ, joint and muscle in the body, and its symptoms mimic many other diseases. Sadly, there is no cure and no linear path to healing. At best, there is remission. Lyme is nothing if not unpredictable and destructive.

After the fatigue and pain had beaten me down each day, Tom got what was left of me — which was never very much. Although I was his wife, I was also his patient, and sickness was a prominent third entity in our marriage. I constantly needed his assistance, and therefore I couldn’t tend to his needs or reciprocate his affection. On an occasion, we had rare moments of joy and laughter, but they were always short-lived by a flood of symptoms. There wasn’t anything I could do to change my fate, but Tom, well, he could be spared from this tragedy, I thought. I became convinced I could release him of his caregiver duties if I finished out my remaining days living with my parents in Minnesota, and I prepared myself to tell him to move on with his life and find someone else.

One day, I called Tom into the bedroom and beneath an outpouring of tears, I uttered, “You need to leave me before this ship sinks. I’m not getting any better… you don’t need to sink along with me.”

Quietly, Tom sat on the edge of the bed and listened to me as I continued, “There’s still time to save yourself. You don’t deserve this! You can remarry and have the family you’ve always wanted,” I sobbed, knowing that those things weren’t possible for me.  

The heaviness of my words took my breath away as I realized I was letting go of the person I loved most in this world. My heart couldn’t endure the pain, so I covered my head with a blanket; I was no longer able to look at him.

Suddenly, I felt a gentle arm wrap around me and heard these tender words, “Jenny, if you think I’m going to leave you, you don’t know me very well. I’m the type of guy that would sink with the ship. I’m not leaving you. I love you. I need you in my life. Where would I be without you? Probably alone and a lot less happy.”

The tears slowed to a trickle and then halted. Tom could be a little rough around the edges sometimes, and I liked to think I’d softened him up a bit over the years. As an image of us laughing together popped into my mind, a small smile formed on my lips. “That’s true,” I mumbled from under the blanket, “You would be alone and a lot less happy without me.”

At that moment, Tom’s words reminded me of my worth in our relationship, which I had unknowingly lost somewhere along the way. I realized Lyme disease might have stolen a lot from me, but it didn’t diminish my value as a woman, wife, friend, or partner. Though, I’m embarrassed to admit I believed the lie that I was somehow “less than” more times than I can count.   

Three years into aggressive Lyme disease treatment, and I am still working toward recovery. Though I’ve made great strides, our life together looks nothing like most other couples our age — no children, no financial stability, and no grand plan for the future. We live simple, quiet lives with three dogs and the constant struggle and uncertainty of a chronic illness. During those previous months of intense struggling, I’m thankful Tom refused my offer to leave. I know I would be alone and a lot less happy without him too. Today, there’s a lot of love between us and a mutual understanding that we are stronger together than apart as we continue to fight this ongoing battle. 

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How Do You Love Your Chronically Ill Body Even on the Bad Days?

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One

That night, I dreamt my body had become lead. My muscles swirled in silver pools, and as the sun rose, I watched them harden. My body became landscape, valleys and rivers and hills and one by one, each moving piece became stiff and still and stagnant. As it happened, I stood nearby and stared.

When the dream broke, I unpeeled myself from my twisted sheets and dressed for work. I did not remember the specifics of the dream, only the leftover feeling — that of a body experiencing an unbecoming.

Four days later, the doctor at urgent care told me I had a mild cold and sent me home. I listened as my parents and friends reassured me (me, the always anxious) that it was a passing virus. Water, they said, rest.

Five days after that, a doctor in a small lakeside town ordered a collection of tests and scheduled a chest X-ray for the following morning. I am being cautious, she said, there’s no cause for alarm.

When asked, I fought to not speak in poetry. A tiny row of fire ants is crawling down my spine. There is a dirty dishtowel in my abdomen. Someone spilled thumbtacks inside the bone of my hip.

No, they’d say, describe it. Rate it, one to 10. Where does the hurt start. Where does it end. How long. How many days. What times. What muscles. What parts. No poetry, just facts.

Lead, I’d think, the silver pools, I’d want to say. Something is wrong, I’d say instead.

Two

When I am a mother, I am going to ask my children big questions. Then I will write them down so that someday, when they ask me the same big questions, I can hand them the right answers.

Dear child, where in your body do your good days live?

Tell me 10 ways you are strong. Now 10 ways you are smart, and creative, and flawed, and brilliant and messy and magical. OK, now tell me again.

Dear child, what can your arms do? How do you know when your legs are ready for rest? What is your belly talking about when it makes noise? What does it know?

What does your body need? Tell me what you see. Tell me what you hear. Tell me how you already know how to love yourself. Tell me again. Tell it again, and then remember that you know how to.

This year, at Thanksgiving, my littlest cousin watches me eat bread. Her painted fingernails pinch her bread between her fingers and wait till I bring mine to my mouth. As I do, I place my hand on the swell of my stomach and breathe in. Forgive.

I am four months into a deep sickness. Later, I will fall into a pain-filled sleep on the couch while my cousin bounces around the room, drumming her hands on a stomach full of food.

Later, an older relative will lean in and whisper in my ear, You should exercise more, we can all tell you are gaining weight.

Three

The first diagnosis is pneumonia. I tell my doctor I’m going back to work anyways, that I have to. She tells me if I do, I’ll be in the hospital in a week. She tells me this is serious.

The second diagnosis is Lyme disease. They do not know when I first contracted it, only that I have it now. I am prescribed 30 days of antibiotics and told we’ll reassess after that. Six months after diagnosis, I cry hard in a stranger’s kitchen. She was diagnosed with Lyme years ago. This will be the fight of your life, she tells me. I am 24.

The third diagnosis has something to do with folic acid and my body’s ability to process it. I am given a supplement and told to eat carefully. Unsure what that means, I try and cut out sugar and dairy and eat a lot of veggies. Regardless, I can tell I’m gaining weight. My body feels swollen and stiff. I do not recognize it.

The fourth diagnosis is non-celiac gluten sensitivity and I am told to change my diet, avoid gluten, and take more supplements. For weeks, I literally dream of pasta and bagels. I spend my paycheck on fruit and veggies and meat and I stand in the shower and watch the water run off the thickness of this new strange body. Everything aches.

The fifth diagnosis is small intestine bacterial overgrowth and probably happened because of all the antibiotics. In short, it means my body doesn’t process food right anymore. Diet, supplements, time. I spend the day in the hospital breathing into a strange tube and later, when I get the letter saying I tested positive, I barely shrug. Whatever, I think, at this point, who cares.

Four

Here are the questions I wish I had been asked when I was a child, back when I knew the answers:

How do you love your body on bad days?
How do you love your body when it changes shape?
How do you love your body when in constant pain?
How do you love your body when you can’t get through a work day? How do you love your body when others tell you not to?
How do you love your body when beautiful looks different than you? Tell me, how do you love your body (no matter what)?

young girl in field of yellow flowers

Five

One afternoon, in an apartment in New York City, a girl I love takes off my shirt and traces her finger across the naked of my skin. Her hands rest on my stomach and I flinch.

Don’t, I say, embarrassed. My stomach is round and swollen and I hate it. I hate the way my body has filled into spaces I didn’t know there were. I hate the way I feel weak and pale and shaken to my core. I am not this body, I think, I am not worth loving.

She pauses and looks at me. There is light stretching through the blinds. The sheets lay tangled once again. In the stillness, she does not move. Her hands stay where they are.

I love this, she says, her hands on the round of me. I flinch again and look away. No, she says, look at me, I love this.

Her hands move to my thighs, I love this, she says again. Then, my shoulders, and this, I love this.

Now, my face, and this.

Back to my stomach, And this, and this and this.

In my mind, I see the body landscape again. The valleys and rivers and hills. Tentatively, I borrow her words and speak them there. I love this, inside, I feel something start to move, and this, one by one they are moving, and this and this.

Six

In two months I will celebrate my illness anniversary.

I am planning on (gluten-free) cake. And balloons. And lots and lots of gratitude.

I see no other way but this. For almost a year, my body has not been mine. The blood tests, the diet changes, the doctor appointments, the waiting, the fear, the hoping, the weight gain, the pain, the pain, the pain.

I have watched my body shift shape beneath my hands, watched it become new, felt it act old.

For almost a year, I have heard the words “sickness” and “chronic illness” and I have fought and fought and ached and hoped and come out on the other side.

Now, I know there is no side but this. No way, but surrender. No grand gestures of healing, just quiet moments repeating I love this.

Perhaps I will be sick another year, or maybe 10. Perhaps our ideas of wellness and illness are all mixed up anyway. Perhaps the goal, in whatever we face, is to take what we have and make it into our new normal. To love anyway. To listen. To ask ourselves big questions, and remember we already know the answers.

This blog was originally published on The Body Is Not an Apology.

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To the Person Who Thinks I'm Healthy Because I Tried Today

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Yesterday, you saw a Facebook photo of me at a national park. You wondered how, if I am truly ill, I could possibly be hiking. How could I be enjoying myself if I’m sick? How could I have the energy to go on a hike if I don’t have the energy to hold a job?

But what you don’t know is that I pass on many experiences and opportunities because I am sick. Some things are too difficult, some things are not worth it, and some things could be detrimental to me. What you don’t know is that having a chronic illness is like losing every part of what made you who you are. Sometimes I feel like I’m reaching out for a tiny thread that is tied to life — not life itself (because I’m here, I’m living, I’m on Earth) — but to what living life actually meant to me before I got sick. And I’m trying to grasp that thread that connects me to my old self and to what I love to do and hold it close, because I know what makes me a person — what makes me me — is almost gone. I mean, is a life really a life when it doesn’t have goals, dreams or desires? Or no hobbies or social outings? No ways to express itself? No means to take care of itself? No ability to give of itself? Because I am very close to losing every single one of those things. 

It happened gradually. The more the pain, the more I lost. I started out with hopes and dreams (like my dream to hike the Pacific Crest Trail) and I quickly realized that most of those dreams won’t happen because of my pain. Then (just so I’m not constantly sad about those wasted dreams), I began to push the dreams away and forced myself to forget about them. I pushed them further and further away until I finally realized that I barely have the ability to dream anymore. It is difficult for me to think of anything but my pain, and my only dream now is to lessen that pain.

So I began living day-to-day, but not in the “live in the moment because no more worrying yada yada” way. I live day-to-day as in, “I’m in so much pain and heartache that I can’t see anything but what’s bad right now.” The only thing I can ever wish for is relief. I’ve become a prisoner in my own body. There are shackles tied to every limb, every finger, every bone, every cell. 

So when you see me try, you think it’s because I’m feeling better. This is so very false. What you are really seeing is me reaching for life — a shred of dignity, a glimpse of community, a blink of self-sustainment, an ounce of distraction. It’s that thread tied to life that I’m reaching for. When I’m able to have a half-day’s worth of a normal life, it’s because somehow, that life-thread was blown towards me in a small gust of wind, and I was able to hold onto it for a split second. I grasp on in order to remember what it’s like to be human, to live life, to have hopes and dreams.

And holding on to that thread tied to life is so great and thrilling, and in that moment, I can’t even feel the rope burn I’m getting! The wind in my face actually feels good! Until I can’t grip it anymore, and it’s over and I fall. And I suddenly feel the rope burn. And I’m hurt from the crash, because in the thrill of grabbing on, I swung too high. And was the wind that cold before? 

Through it all, I find myself grateful for the gust of wind that enabled me to grab on, grateful for the thrill of the swing, but I’m wary of grabbing on like that again. Because, although I remember the fun and how good it felt in passing, I also remember the pain afterwards. And with each swing, the pain gets worse and worse. 

So while that life-thread is there, in my sight, almost (but sometimes completely) out of reach, I don’t always take it when I can. The price is very high for such a short ride, and sometimes, the reward is not worth it. And I’m afraid if I put too much strain on it, the thread will completely break.

Though it is harder and harder to grasp onto, I will try my best to always reach for it after the pros and cons are carefully measured. So please, let me have my life-thread, let me have my once-in-a-blue-moon ride without judging me or calling me out. I can’t imagine a life without living. You shouldn’t imagine that for me, either.

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Imagine What It Feels Like to Be Me as a Person With Lyme Disease

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Imagine waking up in pain and having to roll out of bed without bending your back because it feels like knives are stabbing you.

Imagine sleeping for hours and days on end yet waking up and feeling completely drained and exhausted.

Alyssa Whitlock

Imagine having a migraine that lasts weeks and nothing eradicates it. Your legs tingle and have shooting pain all the way from your hips to your toes.

Imagine barely moving yet your heart starts working overtime, and you feel as though you’re having a heart attack.

Imagine being in great pain but trying to walk and act normally so others don’t think you’re being dramatic.

Imagine not being able to explain your symptoms because others will accuse you of being negative.

Imagine taking almost 40 pills a day just to barely get by.

Imagine being unable to do the things you used to love like running, walking, exercising and even having intelligent conversations with people. Your brain is in a fog, and you forget the most basic words. You even forget what you were saying in mid-sentence.

Imagine being doubted by others (even loved ones) because they simply cannot see your disease. It’s like slowly drowning in deep waters while everyone else is sailing away in their safety boats. It’s like being pushed to your knees in quicksand and trying to crawl out.

Imagine having to let go of the life you used to have and the energetic, carefree person you used to be.

Imagine your life being completely changed by one small blood-sucking bug — a tick.

This is my life, and I have to make the best of it. This is not negative, fabricated or hopeless — this is real! The CDC estimates that “300,000 people are diagnosed with Lyme disease in the U.S. every year,” according to LymeDisease.org. 

We pray for a definitive cure, we pray for more accurate testing, we pray for understanding and support, we pray for strength and, most of all, we pray for relief.

This is exactly why we need more funding and research — to lesson the amount of people that fall victim to this terrible disease. And for those of you who are Lyme warriors — or for others going through any other kind of illness or hardship — never give up hope!

I know that one day I will be symptom free and pain free; it’s just going to be a long road. I may move slowly now, but I am not stopping!

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How Writing Helps Me Cope With Chronic Illness

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The voice inside my head said, “You need to write.”

It was takeoff. My head was spinning and my stomach started churning. My seat was right on the wing, so I didn’t have my go-to fix, which is to look out the window at the houses getting smaller and smaller. The airplane tilted all the way to the right and then all the way to the left. Just before I reached for the barf bag, the voice said, “Write.”

Motion sickness has been one of the most persistent symptoms of my chronic Lyme disease. When my illness flares, driving makes me so sick I have to sit on the couch for half an hour after I get home and wait for the nausea to go away. It is getting better with treatment, but the last time I flew it reared its ugly head. I took out my laptop for a distraction and slowly my brain came back to me.

Many people with chronic illness turn to writing as a way to cope with being sick. Some of the most beautiful writing comes out of a need to express pain.  

For me, writing has always been the activity that takes me away from my symptoms. Moving my fingers over the keyboard to the tune of my thoughts soothes me in a way nothing else can. It puts me in a meditative-like state, and the words pour out of me like a vinyasa flow. Even on the days when the words come out awkwardly and clumsily, I push myself to keep typing. I can always fix it later; the purpose is to find my groove and forget about Lyme for a while.  

Writing also helps people with chronic illness because it is therapeutic. There are a lot of things I can tell the computer screen that I can’t tell my loved ones. When I’m with friends or family the words don’t come out right. I usually come across as a complainer. The words come out better when I have time to think about what I want to say and write it down.

Chronic illness also leads to a lot of anger and frustration; writing takes those emotions and gets them out of your head. It’s a cleansing process similar to therapy. When you feel like crying or screaming because you got bad test results or your medication is causing a nasty side effect, grab a pen and write it all out.

Writing seems like a solo practice, but for people with chronic illness it is creating communities all over the world. Thousands of people write or blog about their experiences. When we find each other on the internet it makes us feel less alone. It’s a powerful thing to know someone out there is feeling the same way you do, even if you’ve never met.      

Last, but not least, writing spreads awareness. Even if all you can write is a 140-word tweet, you are spreading awareness. Websites and blogs have given a voice to people who feel silenced in one way or another. The more people who hear our stories, the more empathy and understanding there will be for our illnesses, which trickles down to more funding for research and treatment.

Writing is an easy activity to do from bed, and it doesn’t expend a lot of physical energy, which is ideal for people with chronic illness. And there are so many different things to write: tweets, blog posts, personal essays, articles, poems, books, plays, screenplays, letters to legislators…the list goes on and on.  

Writing might not be your thing. I have a friend who says writing, even for fun, feels like an assignment. That’s OK – writing doesn’t have to be your “thing.” Find any activity that helps you cope with your illness. It could be singing, woodworking or rocking your baby to sleep. These things might not be all that easy to do on a plane, but should work in most other circumstances.

I was up in the air for two and a half hours from a layover in Dallas to my hometown of Minneapolis. After I started writing, the flight went by in an instant and my motion sickness faded into the background, like the hum of the airplane noise.

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How I Define Hope as a Person With Chronic Lyme Disease

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I have chronic Lyme disease, and I want to talk about hope — my hope. It’s not the shiny, saccharine kind you see in glittered lettering on Hallmark cards. My hope is deep and messy. It’s the kind of hope that keeps a boxer going in the ring when he (or she, let’s not be gender normative here) is swaying on his feet. It’s the kind of hope that is born out of necessity, not a dream. It’s the kind of hope that keeps you searching for an exit when you’re in a dark room and the walls are inching closer.

I have reached the last fringes of hope. It’s the wild west of optimism where things are a bit gnarly and dark and the air is thick with uncertainty. Because instead of hoping for nice things like a pay raise, a nice holiday or a good grade on an assignment, I’m hoping simply to not get worse.

This is deep, dark and primal hope. It’s tinged with realizations that I still struggle to reconcile with and have to digest in tiny incremental amounts because they threaten to drown me with grief and despair.

Like the fact that what I have has no known cure.

Like the fact that remission is the goal but relapses are common.

Like the knowledge that I’m really unwell when I’m meant to be at my prime. If I feel cut down and debilitated at 25 years old, how on earth am I going to feel when I’m 50?

Like grappling with the expenses of getting adequate treatment.

Like the fact I’m taking medication that creates a nasty withdrawal when you come off it. But if I don’t take it, I’ll experience shaking fits and won’t sleep at all.

Like the fact that my home country of Australia is still arguing over the presence of this illness, according to the Lyme Disease Association of Australia.

Like the schism between what I see in support groups and what I hear from respected authorities. Something has gone terribly, terribly wrong when it comes to this illness.

So my hope is there, and it’s already carried me through years of worsening symptoms, broken relationships, new relationships, financial destitution, physical debilitation and complete loss of independence, all while carrying the above realities in mind.

My next chapter involves going overseas (for a second time) to seek medical help, which will involve more money. But when the walls are closing in, you will take any chance at freedom that presents itself. Even if it looks like a thorny rope from a window high up near the ceiling that may not be big enough to climb out of when you get there — it’s still better than staying where you are.

So here’s to all the people clinging to my kind of hope — the dark, thorny kind that is the only thing left between you and no longer being you anymore.

Follow this journey on Zoe Gets Wordy.

Lead photo source: Thinkstock Images

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