Sometimes you just have to sit in the mess of lupus for a while

I’m usually pretty good at finding the bright side. My friends describe me as their “rah-rah girl,” often reminding them there is still life after a diagnosis and dreams worth chasing. That even when lupus changes the road beneath our feet, it doesn’t mean there aren’t beautiful places up ahead.

I still believe every word of that. But these past few months? They have been brutal.

As the temperatures climbed and the heat and sun settled in, my health started spiraling backward. And not just a little — a level of backward where my usual emergency medicine cocktail didn’t even touch the flare. The kind of backward that makes you look around and think, “Wait, how am I here again?”

In some ways, my health feels like it did many years ago. And that is an incredibly difficult thing to sit with when I have clawed and crawled my way toward some level of stability.

Because people living with lupus know how much work getting better or maintaining stability can take. It’s rarely just one medication or one magical lifestyle change. Sometimes it’s years of learning our bodies, changing how we eat, protecting ourselves from triggers (after we learn them, of course), all while going to countless appointments, trying new meds and supplements, and resting when we really don’t want to. And let’s not forget saying no when every part of us wants to say yes.

In time, we build our lives around this delicate ecosystem that finally seems to be working. And then lupus comes along and flips the table.

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Not looking for the lesson

That’s where I’ve been lately. My table is upside down, folks, and plates are smashed. I wish I could tell you I’ve handled every moment of the past three months with incredible grace and inspirational quotes. I have not.

There have been days when I’ve been frustrated, angry, scared, and overwhelmed. I’ve been sad about the things I’ve had to step away from, and I feel exhausted by the sheer amount of mental energy it takes to live in a body that suddenly needs so much attention again.

And maybe the biggest thing I’m learning in this particular season is this: I don’t have to rush myself out of those feelings. I don’t need to add extra pressure on my already overfilled plate. There is so much pressure in our culture to find the positive, be grateful, and look for the lesson.

And yes, perspective is a beautiful thing. But sometimes something is simply hard. Lupus is hard. Watching your body lose ground you fought incredibly hard to gain is hard. Missing complete seasons of your life because your body is using every ounce of energy it has to fight is hard. Acknowledging that doesn’t make us negative. It makes us human.

Rest in the mess

My spring and summer flare hasn’t ended yet. There’s no tidy little bow I can place on this story because I’m still in the weeds. I’m listening to my body, and I’m stepping back from some things I deeply love because right now my body is asking for more from me than usual. And I hate that sometimes.

There. I said it.

I can hate this season and still love my life. I am allowed to feel really frustrated and be grateful at the same time. I can also be deeply rooted in my faith but shout out, “How much longer, God?”

Hope and grief are allowed to sit at the same table. They are sitting at my flipped-over table right now, along with anxiety, overwhelm, and self-compassion.

I still wholeheartedly believe there are many wonderful days ahead in my life. But I am not going to force myself to push through these hard feelings because I feel pressured to do so. And you don’t need to either.

So if you’re in a hard season right now, remember that you don’t have to turn your pain into an inspirational lesson for the ‘gram before you’ve even had time to reconcile your feelings. Or ever, for that matter. You owe no one anything.

Sometimes we just have to sit in the mess for a while. And we rest. And we remember that even in these moments, in the unfinished, uncomfortable middle, we are still worthy and filled with purpose. Because this is just a blip on the radar. It’s not our entire life’s story.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.