Lupus Is A Bully

“My spirit is broken.”

This is what I told my specialist the other day.

Some might say that’s dramatic, especially since I appear to have such an awesome life.

It’s true. I have a great life. I get to spend the majority of my time not working, playing outside instead. I paddle, hike, ski. I go on multi-week and multi-month backcountry trips. I have more time than most to saunter about in wild places.

And I have John in my life.

But having a lovely life doesn’t negate the struggles I face daily in coping with an autoimmune illness. I can have a good life and still struggle with depression. That doesn’t make me ungrateful though plenty have said that is the case.

I am well aware that when it comes to autoimmune illnesses I have it pretty good. It could be a lot worse. But losing the ability to do what I love most, to lose abilities I once held dear is jarring. It requires a whole rethink of how I see myself. It means finding joy in new things. It means mourning the loss of what was my identity.

If a person talks about struggles they risk being labeled a downer. A complainer. Ungrateful.

But it is just that fear of speaking of struggles that isolates us. And isolation leads to loneliness and the path beyond becomes darker. It leads into a realm that is even more forbidden a topic to discuss.

Instead of telling people to buck up, pull up your big girl panties, how about just listening. I post stories about lupus not for sympathy but because adventuring in the backcountry with an autoimmune illness means what was once easy will no longer be. It is isn’t possible to move through life without lupus influencing my day to day life so how can I possibly never speak of how she bullies?

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