Summertime lupus flare-ups are brutal, but they don’t define me

Let’s start with a little story, shall we? It’s currently 142 F outside.

OK, that might be a slight exaggeration, but not by much. I’m living through one of the most brutal heat waves my area has seen in years, hitting over 105 F daily. Like clockwork, my body has decided it’s the perfect time to throw a lupus flare summerfest, complete with a fatigue conga line and a joint pain piñata.

I’ve been stuck in this never-ending flare since early June, and usually by now my body would’ve let up a bit. But not this year, even after a double dose of emergency meds from my doctor. Nope, this year, the flare decided to unpack its bags, redecorate my insides, and settle in like an unwanted roommate who doesn’t pay rent and eats all my energy.

Let me be real with you: When a flare lasts this long, it doesn’t just break the body. It starts to break the spirit, too.

Recommended Reading

June 26, 2024 by Marisa Zeppieri

How I ensure smooth sailing during travel with a chronic illness

Our worth is not conditional

We lupus warriors already live with a gas tank that’s constantly on empty. We’re operating at a deficit, juggling medications, doctor appointments, unpredictable symptoms, and the sheer exhaustion of just being. Add in summertime chaos — the kids are home from school, expectations of beach days and barbecues abound, and social media feeds are filled with sunny vacation pics — and suddenly you’re not just physically flaring, you’re emotionally spiraling. Let me be the first to say that you are not alone, friend.

It’s a lot. And when you’re deep in a flare, especially one that won’t budge even after weeks or months, it’s easy to start questioning your worth. You start wondering if you’re letting people down. You feel like a burden. You cancel an activity (again) and think, “They’ll stop inviting me soon.” You look in the mirror and barely recognize yourself. Maybe, like me, you’re afraid to even tell your family and friends how you really feel because you’re afraid they won’t want to hear the truth.

And then, the whisper starts: “I’m not lovable like this.” “I’m not worthy like this.” “I’m just too sick.”

I know that voice. I’ve heard it a lot lately. It’s been loud these past few months. But here’s what I want you — and me — to remember: You are still worthy. You are still lovable. Especially right now.

Your worth is not conditional. It’s not based on how productive you were today or whether you made it to the party, the grocery store, the barbecue, or even the shower. Nor is it based on how clear your skin is, how steady your hands are, or whether your body let you function “normally” today.

Your worth was never meant to be proven through performance. You exist, therefore you matter. Full stop.

So how do we remind ourselves of that when the lupus pain is loud, the flare won’t settle down, and the world keeps spinning without us taking part in it?

Here are some mantras to whisper to yourself (or shout, or write on your bathroom mirror in lipstick):

1. “I am not a burden. I am a human being with boundaries.” Setting limits isn’t selfish. It’s how you protect your energy. It’s how you stay here.
2. “Rest is not weakness. It’s resistance.” We live in a world that worships hustle and dismisses healing. Every nap, every pause, every “no” is a radical act of self-love.
3. “Even on my worst days, I am worthy of love and care.” Especially on your worst days, because that’s when love is needed most.
4. “This flare does not define me.” It may shape the season you’re in, but it is not your whole story.
5. “Disappointing others is OK if it means honoring myself.” Yes, you might miss the outdoor barbecue. You might have to say no to a family trip or a friend’s pool party. That doesn’t make you a bad mom, friend, partner, or human. It makes you honest. And it makes you sustainable.

Now, I’m not going to lie to you and say I have this figured out. Just yesterday I cried into my heating pad (while I had an ice pack on my back, go figure). I wore SPF 100 sunscreen and used umbrellas and window tint and still flared.

I’ve been doing a lot of mental gymnastics trying to remember that my value isn’t tied to how “useful” I am during this blazing inferno of a summer. But I’m working on it. And maybe you are, too.

So if you’re in the thick of it right now, come sit next to me. We don’t have to fix it all today. We just have to remind ourselves that even here — especially here — we are still worthy. Maybe we’ll make this our mantra of the month: “Flare-up or not, I am still fabulous.”

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.