When I was first diagnosed, five years seemed so far away. Here I am five years later, and I never expected the journey. What has most amazed me about these past few years is how God has shown me His faithfulness and gentleness. He has shown up in big ways and small ways. Receiving the diagnosis of a chronic illness in 2017 was never something I wanted or anticipated. Still, God was good to give me the illness anyways.
I have an autoimmune disease called Sjogren’s Syndrome. Sjogren’s affects my ability to make moisture. Moisture in the body is crucial for more than just eyes and your mouth. Your joints and stomach need moisture to function properly as well. As with many chronic illnesses, Sjogren manifests itself differently in many people. Some people have intense dry eyes and mouth, others suffer from disability-inducing joint problems and brain fog. Thankfully, my symptoms (dry eye, stomach issues and stiff joints) have always been rather light.
Though I did not realize it at the time, the story of my diagnosis had God’s fingerprints all over it. I had a flare up of symptoms in late September 2017, a doctor’s appointment with a specialist a week later, and then a full diagnosis six weeks after that (which has been accurate so far). People might not realize this, but for many with chronic illnesses, the process of getting diagnosed can take years or even over a decade.
I took that first Winter and Spring to stew in contemplation. After the speedy diagnosis, I had to wrap my mind around having a lifelong illness. It haunted most of my junior year of high school. However, this coming to terms never had to happen; I was being melodramatic, especially given my symptoms at the time. I do not say that to mock myself, but instead to chuckle at what was true. I even had a doctor tell me to stop thinking so much about my symptoms, as many of them turned out to be more psychosomatic at the time.
This stewing was really an act of self-centeredness. My thoughts were consumed by potential pain. When I stopped worrying about the possible outcomes of my illness, I realized that my current situation was not that bad. Ultimately, all I had to do was stop thinking about myself.
God was patient and gentle with me throughout those first several months. As I fretted, He was slowly working in my heart. He let me process and stew, but all the while, He was changing my heart. By the Spring of 2018, I had a new attitude — one that said, “If it is Your will, then let it be.” If He would use my illness for His glory, then I would accept it. I look back now and see this attitude change as a hinge moment. In a moment, my illness transformed from something despicable into a thorn to be cherished. I won’t pretend that this cost me very much at the time. My physical ailments were dry eyes and a touch of joint stiffness. Nevertheless, I’m grateful He changed my understanding before I had to deal with worse ailments.
I had to unlearn living based on the potential of my illness. It took me a while, but at the end of those three years, I lived by the saying “Don’t let the illness limit you.” This was a livable operational motto until the illness presented new setbacks.
In the Summer of 2021, I was at my healthiest since the diagnosis. I miss how I felt that summer. I did not realize how quickly you can forget what being healthy feels like. That Fall, my good health was more of a memory. God was asking me to learn something new. I had promised God that I would embrace my illness if He used it for His glory, but until then, I never really had to follow through on the promise I made God that Spring of 2018. Then, when studying abroad in Italy, I saw my health begin to crumble. Soon into this new adventure, I realized my limits. In our first final project, we were supposed to do giant drawings on sight. However, the Friday before we began the project, there was a problem. After being on my feet for 8 hours or more a day, my joint pain was no longer the dull stiffness that I was accustomed to and instead felt more akin to the biting pain from September of 2017. I felt silly and foolish when I went to talk about it to my program director, a man I hadn’t known for even three weeks. I had to ask for allowances and changes, or I was going to run myself ragged. The necessity of slowing down and respecting my body’s boundaries is a lesson which I am working on learning to this day.
Until that week in Italy, I misunderstood the motto I had meant to learn. The motto of “Don’t let the illness limit you” was meant to talk about the potentiality of the illness—I could not let the possibility of more pain stop me from living life. However, I actually took the motto to mean “Always push through when it is hard. Pick yourself up and always keep going.” I did not realize the difference between what my illness could be and what it was in reality. Furthermore, I realized that even though I gave the illness to God, there were still aspects of it that I gripped white-knuckled. Everything boiled down to my desire to define how I gave God glory. I was to glorify God in both my strength and my weakness.
Along with learning this new lesson, I experienced the development of new symptoms. My hair loss became a lot worse right before I travelled to Italy. Even though I experienced hair loss since the diagnosis, I never had to medicate it until more recently. In addition, a new symptom – bad knee pain – developed after returning from Italy. It hurt to kneel and sounded like someone twisted bubble wrap when I bent down. The new symptoms (my knee pain in particular) have presented a new set of challenges. However, God has used them to continue to grow me, and I know I am able to navigate them with Him.
Accepting my weakness is a struggle to relinquish success by my own efforts. In my foolishness, God has been good to me. He has been gentle to remind and encourage me. His promise to Paul, “My grace is sufficient for you, for my power is made perfect in weakness” is as true for Paul as it is for Christians today (2 Cor 12:9). God wants me to desire to glorify Him even when I do not succeed. He can be glorified in my success as much as in my weakness. Perhaps, even His glory would come about by other people blessing me rather than myself blessing others.
My friends have accepted my weaknesses better than I. As I have learned how to open up about my struggles, those around me have been consistent in caring for me. I have been humbled by all the ways they have stepped up to show me love.
People have been consistent in praying for my bad knees, even though I felt ashamed to ask for prayer. A friend has checked in and encouraged me as I deal with fluctuating hair thinning. Another friend thought to factor in the strength of my knees when planning a group hike. She approached me separately at church to get my thoughts. I cried on the way home.
There are many more examples, and I hold them all dear. God has been good to surround me with people who are willing to be gentle with me when I am not. When I realized that my weakness was something to be embraced and not scorned, I began to see myself more like how God sees me. In my self-centeredness, I set myself up as the master, and I am a cruel master. As I have learned, self-centeredness prevents us from loving ourselves as God loves us.
I still have a ways to go in my sanctification and learning to wholly trust in God’s strength. However, even on the hardest days, I can look back and know God has used it to draw me closer to Him. I now realize that knowing God will always be worth going through earthly pain. As bad as my health might become, it will be a chance to run towards my Heavenly Father. If my joints fail me, then each pang will sing of God’s faithfulness. Every hard experience will be an opportunity to experience new depths and experience new dimensions of the character of God. One day, my chronic illness will die when I do, but until then, I will cherish the thorn God has given me.
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