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Why I Experience 'Flare Fear' on My Good and Bad Health Days

The Fear. The anxious, stomach churning, paranoia riddled feeling deep inside when you feel that something is about to go wrong. You feel sick, you’re sweating and there’s an impending sense of doom. You’ve felt it right? I think we all have at some point. I certainly have, considering having had anxiety most of my adult life – and I know I’m not alone.

But, the fear I want to talk about is slightly different. It’s the fear of a flare-up, or “flare fear.” It’s even the fear of good days.

“What the heck is she on about?” I hear you say. Let me explain.

I have myalgic encephalomyelitis, or chronic fatigue syndrome, and fibromyalgia. Both are very debilitating, painful, exhausting illnesses to have. When flare-ups happen, there’s little to nothing I can do but ride it out, put my life on hold and wait for the symptoms to fade. This could be days, weeks or even months later.

People living with these conditions can spend days in bed too exhausted to lift our heads off the pillow, lights and sounds triggering sensory sensitivities, every single part of the body aching like we have a hangover and the flu at the same time, joint pain and brain fog so thick we can’t remember anything, can’t coordinate our bodies to walk straight and generally feel like poop. Sounds awful doesn’t it? Welcome to my life during a flare-up.

So, understandably, when these awful flare-ups finally start to lift, and the good days start to increase and then eventually outnumber the bad ones, it feels amazing to feel “normal” again. I say “normal” as even when I’m not in flare-up, I’m still tired and in pain everyday, just at a more manageable level. Probably how someone who isn’t ill feels is on a “bad day.”

It feels fantastic to finally be out of a flare-up and to start actually leaving the house and having a life. I sometime have very short periods where I feel well for a week, and then go right back into flare=ups, but occasionally, I’m granted with magical spells of a few months where I feel almost like my old self again. I usually feel fantastic for a few months, live life as much as I can and then bam! The fear hits me. It taps me on the shoulder, slaps me right across the face and says, “Oh hi, you look like you’re having a nice time.  Remember the pain, the exhaustion, the brain fog that makes you forgetful? Well what if it was to come back tomorrow?! Wouldn’t that just be a kick in the teeth?”

Yes. Yes it would. The fear takes hold of me and I stop enjoying being “well” as much as I should, as much as I deserve to. In the back of my mind, I’m always wondering if today is the last day I’ll feel well for months. Always wondering if I’ll wake up the next morning in agony and too tired to get out of bed. Or being anxious that I won’t make it to that birthday party, wedding, or other important function in a weeks time.

It’s absolutely awful. I get to feel well enough to go out and have a bit of a life, feel physically better than I have been, but then I get a nice helping of anxiety, fearing for the day the symptoms of doom come back! It just doesn’t seem fair.

The fear can even strike whilst in flare-ups, when you fear your symptoms worsening when you have to do something you know will make you feel worse because you have no choice. Going to see family, a doctor’s appointment, food shopping. When you already feel ill, knowing something you must do is going to make you feel worse is like a form of torture so the fear and dread takes over. And it’s all a vicious circle too, as the anxiety can flare-up symptoms too

Recognizing what triggers your flare-ups and symptoms can help with some of the fear and allow you to avoid some of them. Emotional stress, exercise, viruses and certain foods are some of mine, but I also have them out of the blue with no cause I can think of. Even when you do know your triggers, they can’t always be avoided, like getting sick with a virus or something sad happening in life that understandably makes you emotional.

A few things that can help you to deal with the fear are:

1. Pacing. Take things slowly, plan how much energy you need for tasks.

2. Mindfulness. Focus your attention on the present.

3. Distraction. Keep your mind active with reading, crafting, etc.

4. Plan. If you know certain things trigger you, be as prepared as possible to deal with them.

5. Support. Tell your friends and family how you are feeling so they can help you.

What do you do to help you get through the fear?

Getty Image by MarinaZg