Understanding Your Flare Fettered Friend

What does a pain flare feel like? A friend explains in this guest article

Has a friend recently told you: I feel a pain flare coming on, I’m in a flare, or I’m coming out of a flare? If so, what does this mean for them and what does it mean for you? Maybe you want to help but are unsure how? In this article, guest author Avi, who lives with a complex auto-inflammatory condition and cares for a daughter with hEDS, explains how we all can support our loved ones living with chronic pain. 

What's a Flare?

A pain flare is a sudden increase in symptoms that may include overwhelming fatigue, brain fog, headaches, joint and muscle pain, and gastrointestinal issues. The flares typically are unpredictable and often triggered by activity, stress, weather changes, or no clear reason at all. Flares of any kind though from a chronic condition like Fibromyalgia, an acute condition such as cancer, an invisible disability or more visible one, can all be understood and supported better by communicating our experiences. With this piece, I hope to translate those flare insights to help you better understand what it feels like and offer tangible ways to help.

Webster’s dictionary defines a flare as something that burns unsteadily as a flame whipped about by the wind; this is a pretty apt description of what a pain flare feels like. In a flare state, your body is unsteady, unreliable, and it feels like some outside force is whipping you about. Further dictionary entries define a flare as a very bright light used as a distress signal. Similarly, our flaring bodies react to internal or external stimuli by sending distress signals in the form of symptoms; these may be faulty signals but they are not imagined.

If you have not been initiated into the flare club, how can you understand what it feels like physically and emotionally? You can! Think back to when you’ve had a cold or flu. What did that feel like? With a cold, you may experience some symptoms: sore throat, stuffy nose, headache, and a general feeling of being forced to slow down. Typically, we try to push through, drink lots, and take some over the counter medications to suppress symptoms and keep moving through our day. With the flu though, you might not be able to push through and must relent to your demanding achy body. There in bed, you may alternate shivering under a mound of blankets or throwing off your covers in feverish delirium. You may remember those internal flu-induced debates with yourself— do I really need to get up to go to the bathroom or can I do without going to the kitchen for a glass of water? The effort of contemplating these ridiculously simple choices is exhausting. 

The Flare Analogy for Those Who Don't Get It: Its Like the The Flu Herein the analogy has its shortcomings because many of us who experience flares tend to function on a day-to-day basis as if we have a cold. There is always a low hum in the background reminding us to be attentive to our bodies lest we throw ourselves into a flare. A flare is more akin to the flu but the biggest difference is believability. No one doubts you are feeling ill when you have a cold or flu–you can see it. In contrast flare symptoms are often invisible to others.

 In 2003, Christine Miserandino wrote a blog post titled “But You Don’t Look Sick.” She was the originator of the concept of The Spoon Theory. In order to illustrate what it feels like to live with Lupus, Christine grabbed a handful of spoons from the table and showed them to her friend. Each spoon represents a unit of energy and on any given day, she is allotted a certain number of spoons. Getting up uses a spoon, getting dressed another, eating breakfast– a spoon, but cooking breakfast could use up two spoons. Suddenly, it's the late afternoon and she has used up all her spoons. What is she going to do? Unlike her friend who has an abundant supply of spoons, Christine has no way to replenish hers. And should she imagine pushing through without any spoons?  Navigating spoonless is akin to driving a car without fuel. Soon she will be running on fumes and inevitably crash into the pain flare zone. Christine was trying to illustrate to her friend what it feels like to go through her daily mental gymnastics. In the throes of a flu, you might similarly experience having fewer spoons than usual and how weary it makes you feel. 

The Never-Ending Flu of Long COVID: Everyone Knows About Brain Fog Now The pandemic, and especially those who have experienced long-term COVID (also known as long haulers) has given us language to elucidate some of the most difficult flare symptoms–namely brain fog and fatigue. Anyone connected to the chronic illness community intimately understands brain fog and fatigue. Others who contend with mental health issues, and anyone who has grieved a loved one is also intimately familiar with brain fog and fatigue. In an article about Brain fog, psychotherapist Stephanie Priestly describes a range of symptoms including: poor concentration, feeling confused, thinking more slowly than usual, fuzzy thoughts, forgetfulness, lost words and mental fatigue. She sums it up best though with this statement–“I’m just so exhausted with being exhausted and having to try and explain that to someone else feels impossible.” My fellow flareful friend, Christie Cox visualizes her pain flares - especially the ones from barometric pressure changes - as if her body was being crushed like it was a soda can pummeled by a giant fist from above.

Brain fog for me is often an early warning sign of a flare coming on that persists through the flare and even post flare. Webster’s Dictionary makes reference to a flare as spots that appear on film or a photograph caused by light leaking in. Imagine that film or photograph as your brain and that splotch of light as a veil upon your senses. Dr. Laura C. Otis talks of the very real emotional ramifications of brain fog. “More compelling than the stuffiness and aches was a feeling hard to describe. An eeriness. A fear. A sense of life dimming. A sense that I was becoming a ghost and falling out of life.” When I feel a flare coming on and those distress signals are chiming in, there is very little I can do. Flareful is a state where it’s very easy to fall into that mental well of emotions–will this ever end and will my life always look like this flare. It’s easy to see how being in a flare can put you out of sync with the rest of the world that seemingly is moving at a faster pace. This is where your mental reassurance will make a world of difference.

Tips on How To Help A Flared Friend As a caregiver or friend of a flare fettered friend, you may become aware when your once organized go-getter friend is overwhelmed by the simplest of tasks. They may even have difficulty speaking coherently, can’t concentrate, are forgetful, and even confused. We, however, are very self-aware that we are foggy-brained and it can feel very frustrating and even quite scary. 

Although you cannot stop or fix my flares, or clear my brain fog, believing that our flares are really happening is validating. Understanding that we have no control over our flares can be frustrating for both of us and patience is not easy but is critical. You might learn to tune into those early distress signals, but even if you can’t detect the signals, you can remind us that flares by definition last only a little while and you will get through this as you have before and will again. Inevitably our fellow foggy brained friends learn to lean into our body’s needs and back away from anything but the most necessary daily functions. And you, my flare-free friend, might think you are the appointed coxswain pushing your rower to fight through the flare beast. Don’t. Please don’t try to push us through. There is only one guaranteed outcome–opening the flare floodgates that will certainly overwhelm and topple us out of the boat. 

It’s a fine balance to walk beside your flareful friend so here are a few more pitfalls to avoid and tangible things you can do. In actuality, you have lots of ways to help us through the emotional side of a flare. Inevitably when I am in the belly of the flare beast, I feel unworthy and a burden to my loved ones. I feel like I am letting friends down (who inevitably I cancel on at the last minute). You, my flare-free friend, can remind me that I am not alone. Simply acknowledging that this flare sucks will make me smile and feel validated.

Here are some other quick do’s and don’ts when dealing with a friend's flare.

1. Don’t ask me questions or ask me decide (my foggy brain can’t handle it)

2. Please don’t take my condition as a personal failure on your part

3. Do offer basic sustaining measures of food and drink within easy reach (but don’t be offended if the food or drink goes untouched)

4. Show you care (perhaps by bringing me comforts like a heating pad or cooling cloth)

5. Just check in–ask not are you feeling better but rather how are you managing? Holding up? Can I bring you x, y, z?

6. Do be patient and forgiving. We don’t want to be flaky friends but inevitably we can’t keep pace with you or bounce back like you might.

7. Reach out a hand (metaphorical or real) reminding us that we will not be stuck in this flare forever.

8. Help break tasks down into their simplest components

9. Applaud small successes (seriously, getting out of bed should be recognized as a major feat, and a shower on some days can feel akin to scaling a 14k mountain)

10. Help us find the carrots–those non demanding distractions from our current mental and physical state that takes us to a happier place (carrots can be as simple as watching a silly television show together, sitting in the sunshine, or doing other self-care, happy-making measures). 

So now my flare-free friend you can imagine more intimately what a flare feels like but you also know that you can make a world of difference. Beyond the physical and often invisible symptoms, we inevitably feel out of sync with life, and mourn those friends and loved ones who don’t believe or understand what we are experiencing. A simple acknowledgment on your part can go a long way to taking the angst out of the flare. 

At times, I may feel resentful of the daily mental hoops I have to go through, but on the flipside when I feel flare free, I don’t sweat the small stuff or take even the littlest things for granted and that is a gift I can share with you, my flare-free friend. So next time you hear I’m feeling a flare come on, don’t shy away–it’s not contagious, but know I’m in for a bumpy ride.

Thank you for listening and trying to understand!

-Contributed by guest writer and zebra mama Avi