Why Living with Lupus is like a Scavenger Hunt—Part 1

Something was wrong with me. I just knew it. I was in my early twenties, freshly graduated from university and starting work at my first full-time job. Flushed with my own success, I threw myself into work, embracing everything it threw back at me. The world was my oyster.

Except this oyster was woefully sick.

What’s Wrong with Me?

The first sign was fatigue. No matter how much I rested or how many holidays I took, I was utterly exhausted. Then followed the vocal problems. I lost my voice, not just for weeks, but for years. A host of other strange issues marched through my body: rashes, numbness, gastrointestinal upsets, constant pain. I started seeing doctors and then specialists, trying to work out what was wrong with me.

The scavenger hunt had commenced.

My doctor dismissed me. ‘Oh, you’re just stressed. You need a holiday.’ I rolled my eyes. Of course I needed a holiday. Didn’t everybody? But holidays had not made any difference to my symptoms. Another doctor guessed that I had a virus. Sure, that must be it. A virus that keeps on going for years. A specialist told me I had a ‘weak spot.’ That’s when I realised the stunning truth: the doctors had no clue.

I started a spiritual scavenger hunt. I began praying. I asked the Lord to provide answers for what was going on in my body. I sought his clarity and wisdom. I surrendered my whole life, body and soul, to his loving care again and again. I requested prayer from church and family again and again.

No answers were forthcoming.

Finally, after a heart ‘episode’ (a polite term for what felt like a heart attack), the voicelessness struck again. I dragged myself off to yet another doctor, but this time, praise God and all his angels, he worked out there was an underlying autoimmune problem. He couldn’t tell me which one though, and there are over a hundred different kinds of autoimmune conditions. It was the kind of answer that leads to a bunch of more questions. It drove my perfectionistic brain up the wall.

After more years of testing, head-scratching and banging on heaven’s door, I was given a name for the madness parading through my body: lupus. This autoimmune disease attacks healthy connective tissue and it can affect any organ in the body: heart, lungs, brain, skin, blood, kidneys, bones, nerves and so on. This was the prize for my hunting efforts. And there was a bonus prize: lupus has no known cure. The only treatment is to treat each symptom that arises.

The news was bittersweet, I can tell you.

Now the real scavenger hunt began. I undertook a crash course in surviving lupus, otherwise known as lived experience. How could I find a way to cope with this enduring illness without a cure? How could I deal with episodes that strike at any time, even if I’m praying and taking my medication and doing everything right? Could I still work? Could I have children? Could I live the life I wanted to live?

Learning about Lupus

Living with lupus is like living with Dr Jekyll and Mr Hyde. One moment it’s sitting politely in your living room, sipping soda, telling you what a lovely home you have. Next moment it’s smashing the glass on the floor, throwing the chair across the room and screaming in your face.

Lupus is wildly unpredictable. It’s not like getting the flu where you feel awful for a few days and recover. Lupus operates more like a recurring cyclone, where all seems calm for a while and then your world turns upside down. Most of the time, lupus makes its presence known through chronic pain, constant fatigue (no matter how much sleep I get), and brain fog (feels like I’m wading through mental quicksand). But when the cyclone hits, I can be literally stopped in my tracks, laid flat on my back, or forced to call an ambulance.

‘Can’t the doctors give you medication for it?’ I get asked this question so often that if I was paid per question, I could fund research for a lupus cure. The short answer is no. There are medications that help control symptoms or calm down a flare, but even if you’re taking all the medications, the cyclone can strike at any time. Medications are more like PPE; they don’t stop lupus from doing its random thing. Because there is no cure.

Being armed with information is one way of coping with lupus. Taking medication is another. But there are a host of other things I have found helpful. And we’ll talk about them next week in Part 2 of Why Living with Lupus is Like a Scavenger Hunt.

Have you experienced a scavenger hunt-type of experience in seeking to understand your chronic illness? What was that like for you? Was there anything that was particularly helpful? Share your story. Let’s have a countercultural conversation.