It just does.
I hate all of it: the pain, the fatigue, the limitations on what I can do, the constantly swallowing pills, the risk that any organ could suddenly fail, the avoiding sunlight, etc, etc, etc.....
But for me, the absolute worst, the one thing that just tops everything else for horror, is that my brain doesn't work the way it should.
I've always considered my brain to be the best part of me. I'm intelligent, I'm creative, I've always had a great memory.
Now, I do and say stupid things. I was holding the baby the other day, talking to her, when my daughter interrupted: "Ah Mum, that's not me, that's Johanna." I knew that, right? I know that my daughter is 22, and the four month old is her daughter. Well, I do right at this moment. At that exact moment I was a little lost.
I hate not being able to lead worship - and worse I hate that the last time I did, the sermon I'd written suddenly didn't make sense and the words all seemed to be gobblydegook and I didn't know what to do about it.
I'm not particularly keen on hallucinations, either. Seeing a strange woman without a face in my flat was disconcerting, to say the least.
Writing is just a part of who I am, and it has been since I started writing stories as a child. But now, half the time I can't spell, have trouble with punctuation, and write ungrammatical sentences.
I have trouble organizing my thoughts, and even more trouble organizing myself to do anything.
So that's the absolute worst for me.... messing with my body was bad enough, but once lupus started messing with my brain, things just became far too frightening.
But that's just my experience.
The one thing that's consistent with lupus is its utter inconsistency, so I asked some lovely lupies on social media what was worst about lupus in their experience.
For lots of people, the pain and fatigue were the worst thing.
For others, it was things they had lost: their jobs and income, their homes, their independence, the ability to do things they used to love, even some friendships.
For some the worst is the cost of managing lupus, some with insufficient health insurance or no health insurance at all.
For some the worst was the unpredictability of lupus - of not being able to plan because there's no way of knowing in advance what will be a good day and what will be a bad day.
For lupie mums, feeling that they're not able to care for their children the way they want to, even being in too much pain sometimes to hold their own babies, is the worst.
Some lupies have other health issues as well, throw in cancer or something equally horrible, on top of the horribleness of lupus and you have a nightmare Stephen King couldn't have scripted.
For some lupies, the vampire life of avoiding the sunlight is a huge sacrifice, especially if they have children who want to do things outside.
Some have found the mental health issues that are often a part of lupus - anxiety and depression - are the worst thing.
For a number of people, the worst thing was becoming isolated.
One lupie who answered, said the worst was when she wasn't diagnosed and didn't know what was happening to her. Knowing what was wrong and beginning treatment had come as a huge relief.
Some of the people who responded were friends of lupies, who found the worst things were:when their friend forgot they'd been there for them; when they had to watch their friend go through the pain and fatigue; or when they lost a friend to lupus.
As I said at the beginning, lupus bites.
With bodies that don't bend where they used to, pain in places we'd never known we had places, fatigue that makes Sleeping Beauty's 100 year nap seem reasonable, the uncertainty of whether or not we'll be able to do tomorrow what we can do today..... there's a lot that's bad. But the absolute worst? That's different for all of us. And it's different on different days. Because that's how lupus is. The only thing that's consistent about it is its utter inconsistency.
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