Lupus Is Easy

I’m pretty annoyed as I write this. Actually, I’m livid.

It is not every day someone makes a comment that gets me this riled up. Except for a doctor who minimises my experience of chronic illness.

I have been avoiding finding a new GP. But last week it was necessary. My chronic illness flared up with some very painful, very persistent symptoms. I hoped they would go away but instead they only got worse.

So I bit the bullet and went to see a new GP, ready to tell him all about my complex health issues. I arrived at his office, armed with a little hope (I’m a die-hard optimist) and a whole bunch of cynicism (I’ve had some bad experiences with GPs).

I’ve had some bad experiences with GPs.

I sat in his office and warned him upfront that I am complex. I told him about my recent acute pain and he replied, “That doesn’t sound complex.” “No,” I agreed. “That issue is not complex. But I am a complex person.”

He asked me to explain. I told him about having chronic pain and autoimmune issues. “Oh, I doubt you have autoimmune features,” he replied confidently. “And even if you do, we can deal with that.”

I stared at him. “No, I’m telling you I have an autoimmune disease. I’ve been diagnosed.”

On the back foot now, he managed to ask, “What is your diagnosis?”

“Lupus,” I said simply.

“Ah, lupus! Lupus is easy,” he said with a wave of the hand.

I don’t know whether it was the acute pain, or the cynicism, or the fact that it was my first visit, but I started laughing. I could not believe my ears. I could not believe that a medical professional who knew nothing about me or my history was trying to tell me that living with lupus was easy.

What happened next surprised even me.

I made an instant decision. I was sick of being minimised and dismissed by doctors. I was not going to be minimised any more.

I was sick of being minimised and dismissed by doctors.

I grabbed my bag and walked out the door.

I have never done that before. Innately passive, I typically sit quietly and listen politely to bad doctors. I have never addressed their dismissiveness. I have certainly never stormed out before.

Whether or not this storm-out was pain-induced or simply the result of increasing assertiveness over the years, I was glad to have set a boundary with that doctor.

But that’s not all. I decided to go back and confront the doctor. I had nothing to lose. And I wanted to protect his other patients.

The doctor was still standing in the open doorway of his office, staring after me. Possibly he had never had anyone walk out on him before.

I turned and marched back up to him. “Do me a favour,” I said almost calmly. “Next time a patient tells you they have a chronic illness, don’t tell them it is easy to live with. Just promise me you will do that.”

He was all nods and apologies. I turned away again.

To this doctor’s credit, he tried to repair the damage he had caused. He invited me back into his office with the promise of a script and asked me about my history with lupus. He apologised the whole time. Unfortunately the damage was done.

As hard as it is to live with lupus, getting it diagnosed has been even harder.

The problem is, as hard as it is to live with lupus, getting it diagnosed has been even harder for me. From first symptom to formal diagnosis was an eight-year journey. During that time, I saw countless doctors and specialists, most of whom seemed set on minimising my symptoms.

“You just have a weak spot.”
“You’re overworked.”
“You need a holiday.”
“You need to work less.”
“Your test results are normal.”

And my all-time favourite:

“You have a virus.”

In my cynical experience, most doctors do not understand chronic illness or complex health issues and nor do they want to. It is rare to find a good doctor, one who not only listens but also believes. I want a doctor who will take my symptoms seriously.

Visiting a new GP is like an extreme sport.

That’s why visiting a new GP feels like an extreme sport to me. It is risky. It is dangerous. It can be bad for my health. No, living with lupus is not easy. But neither is seeing the doctor.

Have some compassion for those living with chronic illness. Especially when they are due for their next doctor’s visit.

Do you have a story of a bad doctor experience? Do others minimise or dismiss your lived experience of chronic illness? How do you cope with it? Share your story – let’s have a countercultural conversation.

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