Imagine putting together a 1000-piece jigsaw puzzle without having the picture. We’d look for flat-sided pieces and corner pieces and then slowly fit together the outside edges of the puzzle. The rest would require tedious examination of each and every piece. We’d have quite a challenge!
This is what doctors face as they diagnose an autoimmune disease. This is Scleroderma Awareness Month. This disease is rare, and thus more difficult to diagnose. Since most of the 100 to 140 autoimmune diseases have similar symptoms, such as fatigue, these outside edges of the puzzle can be put together to form the frame.
We would then know that this is indeed an autoimmune disease.
But what goes in the middle? What is the specific disease?
Unfortunately, each person’s case is unique. Like snowflakes, no two people with the same autoimmune disease present symptoms that look exactly alike. Two cases of scleroderma, for instance, will look different. Additionally, after initially looking obviously like scleroderma, more precise tests may show whether the original pieces fit, are a mild case, or don’t fit at all.
Therein lies the rub. There is no box top picture to guide the process with autoimmune diseases, except with Type 1 Diabetes. It alone has a simple test.
Typically, the puzzle takes four to five years to put together. I’m only three years in, and doctors are still bickering over the pieces. Why? New symptoms have appeared; old ones seem less problematic. At this point, I seem to have mild (thanks be to God!) scleroderma, but I also appear to have several other autoimmune diseases, too. I hope to know soon.
I barely remember what wellness feels like. I’m used to being sick. I’m typically content with my condition, but the longer it takes to diagnose and to treat, the more damage done to my body. This damage is irreversible. When I worry, it’s about how the potential fatality of this would affect my family.
What destruction has occurred to my body while the doctors take years to come to an agreement? Each team of specialists has different views of how this should look. Some listen. Some don’t. Some are curious, essential for solving the puzzle. Some aren’t.
It seemed fitting to post this side of living with a chronic illness right after last week’s post about releasing expectations. When I appear healthy or improved, I’m shoving all of my energy into a short interaction out in public. I may be smiling, but I probably feel miserable, and I may be tormented by dark thoughts.
Tortuous thoughts happen rarely, but they happen. I want to constantly rest in Christ and take each thought captive, but I’m human. When dealing with fear and distrust, I must lean even more deeply into the Holy Spirit as He helps me to govern myself and to rely on Jesus.
The Lord wove me together in my mother’s womb. He chose my genetics. He formed my body. Autoimmune diseases have genetic and environmental causes, and He is sovereign over both. He knows what will cause me to grow, to thrive, and to become the woman He wants me to be.
Part of faith is trust. By God’s grace, I will entrust myself to my Savior’s care. This seems to be the main lesson of my life, learning to make Him the center, learning to rely on Him rather than on myself, learning to truly trust Him with no fear. For these reasons, I’m truly grateful that He’s taking me through this valley. And that He’s with me.
Where can I go from your Spirit?
Where can I flee from your presence?
If I say, “Surely the darkness will hide me
and the light become night around me,”
even the darkness will not be dark to you;
the night will shine like the day,
for darkness is as light to you.
Search me, God, and know my heart;
test me and know my anxious thoughts.
See if there is any offensive way in me,
and lead me in the way everlasting.
(Psalm 139:7, 11-12, 23-24)