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Living with Chronic Illness

It’s okay to not be okay, but don’t stay there.

Published on:
February 12, 2018
Read time:
5 min.
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When I was eighteen, the gland on the left side of my neck swelled to the size of a golf ball. I came home on break from college and displayed the swollen gland with a flippant, “Hey, mom—look!” There was nothing flippant about mom’s reaction—she just about lost her mind, and immediately scheduled an appointment with my doctor.

The next five years of my life would become an endless barrage of medical intervention: doctors’ visits, lab work, an increasing symptom count, and multiple negative test results with no diagnosis in sight.

The next five years of my life would become an endless barrage of medical intervention.
Danae Parker

After some time, my gland went down, but my other symptoms—chest pains, inflamed joints and muscles, abdominal pain, headaches, fatigue—only intensified as the years went on. I was tested for mono, diabetes, thyroid problems, celiac disease, and more than I can even remember. Every test ended with a call from a doctor saying, “The test was negative—you must just be overworking yourself.” My hope was slowly being chipped away.

Diagnosis One

Most people describe their early twenties as the prime of their lives, but I could barely stay awake through dinner. Every prick of a needle, every drop of blood collected in a tiny plastic tube, and every doctor told me that I was okay. But I knew I wasn’t. Something was wrong with my body. I prayed with tear-filled eyes that if an answer to why I was sick couldn’t be found, the Lord would remove my symptoms. Instead they got worse.

In early 2015, my symptoms came to a head. My right thumb joint had become so swollen and painful that I was unable to zip up my boots or even touch my thumb and pointer finger together. My husband implored me to make an appointment with my doctor, but what good would that do? Another round of results claiming I was fine even though my thumb was the shape of a squash? Thanks, but hard pass. Eventually the pain and my grumbling became so unbearable that my husband gave me an ultimatum; I could either stop complaining about my thumb or I could make an appointment and continue to complain. Naturally, I made the appointment.

The usual stream of tests was run and to my surprise, they found something: a positive ANA antibody marker and an elevated CRP protein level. This led me to my Rheumatologist who, through taking what felt like half the blood in my body, diagnosed me with lupus. After five years I finally knew the problem. But to my devastation, that problem had no cure.

After five years I finally knew the problem. But to my devastation, that problem had no cure.
Danae Parker

I remember sitting on my bed and crying as the realization swept over me that all this pain, fatigue, and discomfort was here to stay. My specialist explained to me that, although my medication would be able to help manage my symptoms, it couldn’t rid me of them. I didn’t mind having a health issue as long as it was something that a medication would help make almost non-existent, or better yet, cure. Instead I was stuck with a disease that was temperamental and very little was known about.

This wasn’t fair. It wasn’t supposed to be like this.

After a few months of learning more about lupus and finding ways to cope with it, the tears stopped, the shock wore away, and determination took their places. I wasn’t going to let this stop me from living my life. I would discover new ways to exercise that were easier on my joints, I would familiarize myself with the signs my body gave me that I was about to have a flare or that I needed a break, I would learn to say no to events and outings and be okay with going to bed at 8:00 p.m. when I had to.

Diagnosis Two

With the changes I made to help promote a healthier lifestyle for myself, I could feel my lupus start to even out. Suddenly living with this disease didn’t feel like a daunting or impossible task, I could do this. And I did. In 2017, my lupus had been gloriously stable for almost a year. It was no longer forefront on my mind but settled into the mundane background of things that simply made up my life. Then toward the end of July a mysterious pain started in the base of my right hand. I ignored it, thinking it was just a flare, but it worsened. I couldn’t write because I was unable to grip a pen, pouring a glass of water was impossible because the pitcher was too heavy, and I could completely forget about yoga because there was no way my hand could support my body weight. But the pain didn’t stop there; it spread to my left knee causing it swell up, resembling more of a grapefruit than a knee. I landed in the ER one night in November when the pain spread to my spine and I couldn’t sit, stand, or lie down without an intense pain radiating down my back.

My specialist was baffled, she said my levels were stable, she had no idea what was causing this, but it wasn’t lupus.
Danae Parker

My specialist was baffled, she said my levels were stable, she had no idea what was causing this, but it wasn’t lupus. I was inconsolable at worst and melancholic at best. My prayer journal filled with distressed pleas that God would make it clear, that he would take it away, or even just lessen my bodily suffering. For six months I battled this pain—daily—along with the spiritual and emotional turmoil it caused. Then my specialist ordered an MRI and I got a second diagnoses: Inflammatory Arthritis.

At this point, when it came to my relationship with the Lord, I was a little angry, a bit sad, but mostly I felt betrayed. Why was he letting this happen to me? Wasn’t it enough that I already had one life-changing disease? Now I have to deal with two? Honestly, this is still how I feel some days.

Room for Two

In 2 Corinthians 12:8–10, Paul makes room for such questions and emotions. He writes, “Three times I pleaded with the Lord about this, that it should leave me. But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

Paul doesn’t instruct the struggling believer to simply trust God and be happy. Instead he admits that he prayed for healing from his ailment and didn’t receive relief. Although Paul allows for those who suffer to feel their grief and sorrow, that’s not the end goal, it’s not where we’re supposed to set up camp. We set up camp at contentment.

A couple of my closest friends and I have a mantra we recite to each other during times of difficulty: “It’s okay to not be okay, but don’t stay there.”  Paul doesn’t just tell the Corinthian church to have a good cry and then snap out of it, leaving them to figure out how to climb their way out of grief. Paul gives us the answer: the strength to get up and keep fighting through the grief and sorrow comes only through Christ. Those of us who are, literally, sick and tired know all too well that our own strength isn’t enough, but God’s is.

It’s okay to not be okay, but don’t stay there.
Danae Parker

Through the power of Christ, his strength becomes ours in times of weakness. We are able to keep fighting, to make it through another day of aching muscles, stabbing joint pain and overwhelming fatigue because the strength to do so is not our own. We will have moments when we’ll cry in frustration. There will be days when we don’t have the ability to see the glory our suffering brings the Lord—and that’s okay. But we don’t stay there; through Christ we have the strength to keep pushing and to view our suffering through the lens of eternity. Our diseases make our bodies weak, yes, but through them we’re able to experience the strength of Christ in a way we wouldn’t otherwise. When we are weak, then we are strong.

Danae Parker
Danae Parker is a graduate of Cairn University and an aspiring author currently writing her first novel. She and her husband Greg live in Wenham, MA, with their five-year-old pup and are stereotypical weird dog people. You may follow her on Twitter @danae_parker.

Cover image by Kate Williams.

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