It Can Get Dark Inside a Flare
Last updated: March 2023
I find it a little bizarre that an increase in disease activity is typically referred to as a flare or flare-up. Google’s English dictionary for flare includes definitions such as, "a sudden brief burst of bright flame or light," and "to burn with a sudden intensity." There are other associations with light, such as a flare gun.
I think of my flares as a darker place. It seems contrary that a flare would be a bright thing when my lupus flares are dimly lit at best. And while I can see how "burning intensity" could describe parts of a lupus flare, I still think the word is a bit off base for describing chronic illness. If I had to pick it'd be a word that more closely indicated a type of calamity, upheaval, or crisis. But here I am, flaring.
A winter flare-up
Last week, I had a lupus flare for the first time in months. This was one of my longest flare-free stretches to date, which was particularly surprising since I had missed several doses of my biologic medication while dealing with winter respiratory infections and surgery.
This flare hit my joints hard but it also brought about powerful fatigue. Since October, I’ve had significantly less daily fatigue thanks to my CPAP machine giving me more restorative sleep. I wouldn’t say I’ve been bursting with energy, but I was able to do more on a daily basis.
So I knew that taking 3 naps in one day and struggling to bend my wrist meant I was entering a lupus flare. Even though I've had so many flares like this in the past, I had already forgotten the specific way that this fatigue demolishes my energy. Nothing else in my life has ever brought about a tiredness that resembles autoimmune fatigue.
Life is darker during a flare
One way that flares are darker for me is quite literal. As my eyelids close or I draw my blackout curtains for a nap, I know lupus is taking me away from the brighter parts of life. My computer screen sits turned off – black – because there’s no working on a tough flare day. My phone also sits dark; I wouldn’t feel up to calling, texting, or scrolling even if my fingers didn’t hurt so much.
Other ways that flares darken my life are through pain, sadness, and depression. These feelings can be excruciatingly intense. Living a life filled with pain is difficult and maddening at times. The added burden of flare pain makes me feel a range of emotions, from bummed to hopeless.
There are also all the consequences of that pain; I sadly stay home when I want to jump in the car with my family to run a few errands. I’m discouraged that I need help with mundane tasks and that more of my independence is erased during a lupus flare-up. Living in pain and sadness has opened the door to struggling with depression over the past few years.
Lupus and depression seem to dance with each other, and I rarely know which one is leading. They're intertwined, but the relationship is often blurred. As they dance, there is give and take. Sometimes, when lupus gives a flare, depression takes off at a sprint. Then I have 2 big problems to deal with.
How do you cope during a dark flare?
I’d like to offer you a bundle of tidy tips for a dark lupus flare, but I can't authentically do that. Yesterday, when I thought my flare was nearing its end, I found myself sinking into pain, fatigue, and depression as if they were quicksand. And I did everything wrong.
I let my son, who was home sick from school, watch TV while I slept next to him for hours. I was too tired to properly ask for help. Instead of pursuing peace, I let my turbulent emotions reign as I whined and complained to my husband. I stumbled around in my exhaustion and didn’t hydrate well.
I don't have frozen meals set aside for these flare days, so I ordered food for delivery. It wasn’t healthy food. I didn’t soak in a bath or do light stretches, like so many articles recommend for coping with flares. I even forgot to take my steroid medication that's prescribed specifically for these instances. I didn't feel like myself - I was a perfectionist before years of illness, and stress dragged me down to survival mode. The only thing I did properly this week was rest a lot; it wasn’t entirely by choice. It was all I could do.
And that's the only advice I have for you: hang on. Survive. Just make it through.
There have been times in my life when I've had a plan a, b, and c for these kinds of situations. Unfortunately, lupus and life can become too much very quickly. Right now, my life is like a series of mini-disasters with no distinct plan to follow other than to make it through.
Know that you’re not alone if your flare-up has been a dark place. It might feel like you’re holding onto a telephone pole in hurricane winds, but just keep holding on. When you make it through to the other side, you can start picking up the pieces again. If it feels like you're life is falling apart during a flare, know that this community understands that feeling.
As you’re trying to make it through, remember that part of the definition of flare was "a sudden brief burst." Hopefully, the flare will recede soon and the world will be a little brighter.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?