Learning Through Lupus
his blog post is more personal than my typical posts. Its purpose is to bring people along the journey I’ve been on during my current season. As I know it can be difficult to know how to walk with someone in the midst of suffering, my prayer is that this gives you greater insight and understanding. I appreciate you taking the time to read.
It had been a long time coming, without me even realising it. Over the years, I became susceptible to viral infections, easily tired and giving out of an almost empty tank.
It didn’t make any sense.
I was doing everything right – exercising, prioritising rest and learning to set boundaries. Yet I still felt drained. Based on my prompting, my GP ran a number of tests over a period of months. As soon as she saw positive ANAs (antinuclear antibodies) and an extremely low neutrophil count (a type of white blood cell), she sent me to specialists – a haematologist (specialises in blood disorders) and a rheumatologist (specialises in autoimmune disorders).
Faith vs ignorance
I obediently went to see these specialists, thinking that I was fine but wanting to be responsible with my health.
The journey with the haematologist involved a couple of ultrasounds, x-rays and biopsies of enlarged lymph nodes. Fortunately, I came out in the clear. Thank God!
The journey with the rheumatologist was another story. It was December 2018 when I walked out of his office with the news that I had systemic lupus. Again, it didn’t make sense, I felt fine!
All I knew about lupus at the time was that Selena Gomez had walked through it, put her life on hold for a year and received a kidney transplant.
What is Lupus?
Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. The word ‘lupus’ is Latin for wolf. Sounds intense, right? It’s known as a hidden disease which is difficult to diagnose and not visible to the naked eye.
In my ignorance, I rebuked the diagnosis, though I thought it was in faith at the time.
Ch-ch-ch-changes
I continued with life as though nothing had changed – my high-pressure job, commitments at church, mentoring, industry committees – I stuck with it!
Then, I noticed my body begin to change.
My hair started to thin and fall out. A few months later, after resigning from my job and ready to begin a new chapter of my life, I landed in hospital with stomach pain the day before a missions trip. Determined to go where I felt called, I still went on that missions trip! It took me a few days to recover but I was eventually back on my feet, sharing the love of God with the beautiful nation of Fiji.
It was in the last few days of that trip that I began to experience a sore wrist, then a sore ankle, then sore knees. Of course, being on a faith high, my solution was to simply pray over them and get others to do so as well. It seemed to help, momentarily, only to return again. I dismissed it as my body feeling the stress after being sick then going on mission.
Little did I know, that was when my journey truly began…
When change overcame denial
After returning home, I continued with my flexible contract job, writing tender responses for a new wealth administration platform. It gave me the ability to earn an income whilst pursuing my desire to work within the not for profit industry. It was the start of something new!
By October 2019, I was experiencing pain in almost every joint and became almost immobile. I would lose circulation in my fingers and toes at any sign of cold weather conditions. My brain and my memory became less and less sharp.
What was happening to me? Why did I feel like I was falling apart?! Then I remembered my Lupus diagnosis from almost a year prior. It was no longer something I could dismiss in faith. I now needed my faith to believe for my healing from a disease for which the medical field claimed there was no cure.
“He replied, “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”” | Matthew 17:20 (NIV)
Life as I (didn’t) know it
The next few months were a battle.
Because of my lack of mobility, I had to stop working. Most of my days were spent resting at home in an attempt to minimise stress-induced flare ups.
Living alone was a greater challenge. On my worst days, I could barely move from one room to another, getting dressed caused tremendous pain and opening bottles and jars was near impossible.
My condition really hit home one day when I was on my way to the hospital for a specialist appointment. I was running late after being held up by traffic, parked my car and moved as fast as I could to get there at a respectful time.
I was walking along the footpath when I realised that my “as fast as I could” was slower than an elderly woman with a walking stick who outpaced me! Today, I recall that anecdote in its hilarity. However, on that day, in that moment, there was nothing funny about it. As soon as I walked into the specialist’s office, he looked at me concerned, asked how I was and instantly the tears came uncontrollably flooding out.
To be honest, I felt defeated.
The chasm between supernatural faith and physical reality
I knew in my heart and mind that as a child of God, I already had the victory. I knew that God would fight this battle for me. I knew that I was more than a conqueror through Christ. Yet I felt crushed.
Physically, mentally and emotionally, I was struggling. For someone who used to be relatively self-sufficient, this hit me hard. I had minimal energy to perform the daily tasks of life, let alone implement all the dietary changes my nutritional doctor had prescribed for me.
It‘s in this season that God taught me how to lean on Him and on those around me. It‘s in this season that God revealed His love for me through the kindness of people. I have never felt so close to God as I did in the midst of my pain and suffering.
“And then, after your brief suffering, the God of all loving grace, who has called you to share in his eternal glory in Christ, will personally and powerfully restore you and make you stronger than ever. Yes, he will set you firmly in place and build you up.” | 1 Peter 5:10 (TPT)
New year, new possibilities
Not long after that, I went back to see the rheumatologist the week before Christmas of 2019, my appointment had been moved forward because of the severity of my condition. I was prescribed medication, an anti-malarial drug to manage my symptoms over time. I was told that I could see an improvement from as little as one month, with significant improvement being possible after 3 months.
I had faith that God would accelerate my healing and that the new year would bring new possibilities!
“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” | Isaiah 43:19 (NIV)
The new year came and went. My condition didn’t change.
I had a few good weeks and I was elated – my healing was in progress! Soon after, I experienced the most difficult few weeks of my life with incessant stomach pain on top of the agonizing joint pain and extreme fatigue.
To make matters worse, I developed daily migraines, swelling around my eyes and lips. If you need a visual, Google “lupus swelling” – it’s not a pretty picture!
It was all so bad that my parents had to take shifts to care for me at all hours of the day. For someone who enjoys alone time, I knew it had become serious when I wouldn’t want my parents to leave me at the end of the day.
I felt so helpless.
To remind myself that my circumstance was only temporary, I would (and still do) declare the promises of God daily and take communion to remember the finished work of the Cross.
“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.” | Isaiah 53:5 (NIV)
The beginning of a new year was an especially difficult time.
At a time when I would usually set goals for the year ahead, receive vision from God for the future and start off with momentum – thinking about the future was overwhelming. Almost every conversation was sprinkled with talk of the future, which I found emotionally draining.
All I could fathom was drawing on God’s strength to get through the day ahead. I had to learn to adjust my mindset and live one day at a time. I clung to the truth that God’s mercies are new every morning. God prepared me to endure through the season, by His grace.
“We all experience times of testing, which is normal for every human being. But God will be faithful to you. He will screen and filter the severity, nature, and timing of every test or trial you face so that you can bear it. And each test is an opportunity to trust him more, for along with every trial God has provided for you a way of escape that will bring you out of it victoriously.” | 1 Corinthians 10:13 (TPT)
On the other side of my sickness, there is more.
On the other side of my disappointment, there is more.
On the other side of my pain, there is more.
Pain for a purpose
I believe that my season of suffering carried purpose.
With each day, I learned more about myself and about the God I serve. The growth I experienced through pain would not have happened otherwise. It has made me more content, cultivated gratitude, strengthened my faith and caused me to live with intention.
Since then, I have come a long way. I am yet to receive complete healing but I believe that one day, I will share the testimony of God’s miraculous healing in my life to bring encouragement and faith to others.
“They triumphed over him by the blood of the Lamb and by the word of their testimony…” | Revelation 12:11 (NIV)
Written by Oyelola
Oyelola is a freelance writer based in Sydney, Australia. When not writing for clients, she shares her musings from life with Jesus through He Speaks, I Write. Beyond writing, she enjoys throwing back a frothy matcha latte, bushwalks with friends and curling up with a good book.
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