Why Flares Feel So Scary: Understanding Life with an Autoimmune Disease

Having an autoimmune condition is frustrating, to say the least. So much of what is happening to our bodies feels inexplicable. Why? How? Did I do something to cause this?

Sometimes I feel lucky that my autoimmune disease (lupus) comes in flares. What does that mean? It means that sometimes I feel pretty darn normal. I’ll go through weeks, sometimes months, of feeling like a healthy, normal person. (How I used to feel before the onset on autoimmunity.) My energy levels are normal and I have the same amount of spoons as everyone else, give or take. I can crush it at the gym, make it through the day without a nap, and do all the normal activities, errands, and work tasks that I usually do. People look at me and think, “…but I thought you were sick? You don’t look sick.” And truth be told? I don’t FEEL sick either. I see where the confusion comes in.

But then something will happen and I’ll start to spiral into a flare. It often feels like it comes out of nowhere. (I’m working on figuring out my triggers.) What I notice first is a deep burning sensation in my ankles. Then a few days later, I’ll notice I’m a little more tired than usual. Before I know it, I’m stuck on the couch and I haven’t left my house in five days. I can’t stay awake for more than a few hours at a time, and just walking the dogs around the block feels like a gargantuan task. Cooking? Standing up for more than 20 minutes? Not likely. My muscles ache, my joints feel like they are on fire, and my brain is in a deep fog. Simple tasks feel impossible, and depression sets in. Overwhelming sadness and the feeling that it’s never going to end. That’s what a flare feels like for me.

Right now, the worst part of my sickness is not knowing when, where, or how it’s going to affect me. The unpredictability of it is scary. If I go on that trip, to that wedding, to visit a friend, will that push me into a flare? What if I flare while I am on a beach in Mexico? What if it ruins my whole trip!? Should I even go? How many times a week can I go to the gym? 2? 3? How many social events can I commit to each week? How much is too much? What price am I willing to pay for a night of fun?

My fellow Spoonies are nodding. You guys get it. But if you don’t have a chronic illness, it might be hard to understand what this feels like, so let me try to explain:

Imagine you’ve been in a car accident.

Most of us have experienced a car crash, big or small. It’s scary. Remember how the accident happened in the blink of an eye? How it felt like you didn’t have much, if any, warning that it was coming? When you got in your car that morning, you didn’t get a notification saying “Hey, be careful, you’re gonna get in an accident today.” Nope. You just treated this day like any other. Assumed your drive would be like all the others. Then: BAM. It wasn’t.

OK. Next, try to remember that first time you got behind the wheel again after the accident. Do you recall being extra cautious? How you double (or triple) checked your mirrors, diligently used your signals, checked your blind spots, and stopped for a FULL three seconds at every stop sign? You were a little nervous to drive again. Your confidence had been shaken. Fair. That shit was scary and you didn’t want it to happen again, right?

Now imagine, after this car wreck, someone tells you, “Here’s your car. We fixed it up the best we could. Time to start driving again. Oh, by the way, you ARE gonna get in another accident. Not sure where or when. Could be two days from now, two months, or two years. But it will happen. And it’ll be bad again. OK. Have fun driving!”

Holy. Shit.

Now you are TERRIFIED to drive. You are cautiously looking around every time you drive, waiting for the accident. Trying to see it coming, so somehow you can brace yourself (and maybe prevent it?).

This is what it’s like living with a disease that has unpredictable flares. As I’m driving down the streets of my life, I’m on high alert. Around every corner I’m wondering: am I gonna get in an accident today? Is today the day that I feel the beginnings of a flare? Is this my last “normal” day for a while? Will I wake up tomorrow and suddenly be unable to do normal life tasks like walking the dogs, grocery shopping, laundry, cooking? Never mind the bigger ones like… working, socializing, working out? Every ache becomes amplified - is that a normal “gym sore”, or a “flare is coming” sore? Every “Yes” to a social gathering is marked in my mind, like: is that too much? Is that gonna put me over the edge?

Of course, just like driving after an accident, you have to get back on the horse. You can’t spend your entire life avoiding cars because of one bad experience (or even a few). Statistically, most times you get in a car, you DON’T get in an accident. So do you decide to avoid cars for the smaller percentage of time that you can get into one? Should I just lay on my couch forever, just in case today is the flare day?

I say no (with cautious optimism). Just like that first drive post-accident, I know that most of the time, I like driving. It brings me to wonderful places and allows me to do all kinds of things that make my life happy: visiting friends, going to the gym, and going on trips. Just the same as living my normal daily life does. If I spend my good days holed up and waiting for the other shoe to drop, I won’t get to experience my life.

So I’ve been trying to take it one day at a time. Living my good days like I will never flare again, while still practicing ALL the self-care to avoid spiraling - and reminding myself that if I do flare, each “accident” is a chance to learn. I’ll get better about feeling them coming on. I’ll know when to rest and when to just live my life. I’ll learn to trust my body, just like I learned to trust my car, to protect me when I do get in an accident.

Like I said, I’m lucky. Right now, a big percentage of my days are flare-free. I know it’s not like that for everyone with chronic illness, and for those who flare more frequently: my heart aches for you. I know that you might only get one good day a month, if that.

Having an autoimmune disease comes with a personal growth package. You learn to be brave, resilient, and to trust yourself. You become a cautious but confident driver in life. You bravely face getting in that car everyday, even though you know it comes with a risk. You learn how far and how fast you can drive before your odds of an “accident” increase, and then you find a way to live your very best life inside those parameters. That might look different every day.

My words of advice come from what helps me when I am in a flare and it feels like it’s never going to end: find just one good thing to do today that takes you a tiny step closer to health.

Just keep driving.

A note from the author: This blog post was written three months after I learned I had an autoimmune disease and found myself explaining what flares felt like to friends and family. If you have a friend or family member who is struggling to understand autoimmunity, you can share this story with them. I hope it helps <3