How I Manage the Constant Fear of Flare-Ups with Chronic Illness

Fearing flare-ups from chronic illness can interfere with your daily activities and overall quality of life. Laura McKee shares her strategies for fighting migraine-related anxiety, including 3 steps for creating a Flare Management Plan.

As someone living with multiple chronic illnesses, including migraine, I know how easy it is to slip into a negative spiral, convinced that any change to my routine will bring on a flare-up. Thoughts can be in the form of avoiding activities I used to enjoy or even worrying I'll "jinx" it when I have a run of lower pain days.

I’m worried that any changes to my diet, treatment, exercise regimen, sleep, or even chores on my "To Do" list will trigger days of pain.

What is a chronic illness flare-up?

A flare is:

“…an exacerbation of a chronic disease. Sometimes referred to as a flare-up, a flare occurs when symptoms of a disease that has been present for a time suddenly worsen.”

Definition of Flare, Charles Patrick Davis, MD, PhD

When symptoms worsen for a few days to weeks, we may say that a person is flaring. For example, my migraine symptoms can flare from what I consider to be "regular low-level" pain and nausea to extended periods (days) of high pain, vertigo, and hypersensitivity.

Experiencing a flare impacts our functioning even more than the daily symptoms we juggle 24/7. Chronic illness symptoms alter how we engage with the world.

In my case, my illnesses come hand in hand with a constant fear of worsening symptoms.

Flare-ups have dictated my choices for years

I've spent most of the last nine years in bed. I have a range of complex conditions, including migraine, as I mentioned before, and a rare brain condition - idiopathic intracranial hypertension (IIH). My body is constantly under pressure from high pain levels that are managed with prescribed painkillers and preventative medication.

Over the years, I've had treatment that has eased some of my symptoms so I could rebuild aspects of my life. I can now see friends and family and go out on some of my low-pain days. But the threat of a flare-up is real, dogging my footsteps whatever I do.

Going for coffee with a friend could genuinely worsen my symptoms and pain over the next few days. I never know how long a flare will last. Even the shortest activities can lead to days in bed for me.

I know I'll have a flare-up if I do something big, such as travel to visit family or spend a rare night out with my husband. This means I often have to choose what I will do and what I have to miss out on.

However, over the last 12 months or so, I've been having more frequent runs of lower pain days. This relief has allowed me to start regular swimming sessions with support from a caregiver. Swimming has helped me to create a cycle of change, leading to even more time when I'm not in bed.

Whenever I feel some relief, I’m too scared to enjoy it fully

But respite comes with the cost of being terrified that I’ll "jinx" it. On the way to the pool, for example, my caregiver and I chat. Our conversations are perky, but we avoid saying, "You've/I've been doing well recently." A flare is a ticking time bomb that can ignite with a simple choice of words.

I realized I'd been scared to go downstairs often as I felt it was triggering high pain levels the next day. When pain is always in your life, you tend to set everything you do by it. The worry of having a flare is overwhelming, but it feels very lonely eating every meal in bed.

So, this year, my New Year's resolution was to eat dinner downstairs with my family most evenings. I swapped my bed for the sofa and hoped it wouldn't cause my symptoms to worsen.

To do this, I had to ask myself, "So, what is the worst that can happen if I go downstairs?"

The worst case for me is an increased risk of falling and a long flare-up. But, recently, I've proved something to myself - if I can swim a few times a week without these things happening, I can eat with my family each evening.

Learning to manage fear cycles around flare-ups

It's so easy to get caught up in all the worries, but instead, we have to lean in and ride through the fear cycle. How? We need to challenge what our mind is telling us by asking ourselves, "So what?"

Likewise, we need to stop avoiding things "just in case." We have to push ourselves past the worry of what might happen.

My fear cycles start when small changes have unwanted results, such as a migraine or IIH flare. I don’t like flares, so I fear making changes – limiting myself in the process.

But the more we stop making changes, the more we accept fear. As a result, the fear intensifies.

The "fear cycle" may be better known as the “fight or flight” or stress response. When we're not trapped in a fear cycle, we're calm. But in times of adversity, we tend to catastrophize, triggering needless feelings of imminent danger.

Understanding this has helped me break my fear cycles over time. By challenging my instinctive overprotective thoughts, I've "retrained" my brain. Anxiety doesn't have to win.

I had to accept that the worst case could happen, meaning potential flare-ups. Sadly, I did have a bad fall, which stopped me from going downstairs every day for a while, as it triggered a flare-up. But instead of giving in to myself, as usual, I listened to my body and followed my Flare-Up Management Plan to care for my needs. I still managed the stairs occasionally - it was the first time I hadn't let a flare hold me back entirely.

Many of us with chronic illness have to cope with flare-ups. I recommend preparing a "Flare-Up Management Plan."

3 Steps to creating a "Flare-Up Management Plan"

Flare-ups can be very unpredictable and can happen without an obvious trigger. Some medical specialists say that always trying to find a reason for a flare-up can create more anticipatory anxiety and worsen your pain.

However, there can be patterns that give us some warning that a worsening of symptoms is likely. So, it's worthwhile keeping a symptom tracker to help you spot any possible patterns - without ruminating too much on what the trigger may have been.

1. Create a list of your warning symptoms

This information has enabled me to create a Flare-Up Management Plan to help me manage worsening symptoms better. My plan lists the possible warning symptoms such as:

• Feeling crabby
• Vertigo
• Feeling faint
• Stumbling more often

2. Note down ideas to help manage your listed warning symptoms

Then, I note the steps I will take during a flare-up to minimize the impact it has, such as:

• Meeting with my doctor about potential treatment adjustments
• Pacing myself
• Meditation
• Gentle exercise (when it feels right)

3. List some “gentle reminders” for your mental wellbeing

Lastly, I have a section of gentle reminders to help my mental health during a flare-up, such as:

• Be kind and gentle, focusing on the here and now
• Remember that I haven't done anything to cause this
• Remember that flare-ups pass
• Ask a loved one for a hug
• Focus on small wins or my loved ones' successes

It's been four months of following this plan, and I’ve been going downstairs nearly every evening to eat with my family. This has not affected my pain levels as much as I thought it would. It has been difficult at times, but it hasn't stopped me completely as it used to.

I hadn't considered the impact that going downstairs would have on my family. I interact more with my sons and husband, and my husband has told me he feels less lonely since I've been going downstairs.

I'm still in pain every day, but it doesn't seem to be making my symptoms worse as I'd feared it would for so long. It may seem a small step, but it's a massive change for me and my family. I'm excited to see how I can continue to lean into the fear set by having a chronic illness while managing my flare-ups.

The takeaway

Living with chronic illness is a frustrating and unreliable state. The worry of flaring and time spent in a flare takes up a lot of brain space, so we worry about our condition worsening most of the time. This anxiety can lead to us avoiding scary things, which provides short-term relief. Still, over time, a state of fear and avoidance grows.

We can help break a negative cycle by leaning into fear. Doing this can mean standing up to our inner anxieties and the urge to avoid things we think will trigger a flare-up. Instead of catastrophizing, we can give ourselves a reality check by asking, "What's the worst that could happen?" Keeping an "anxiety journal" can help you discover what scares you, and it can be a helpful tool during a chronic illness flare-up.

Having a clear plan for when I'm having a flare-up means I do what my body tells me to do. My mind may be setting off 100 alarm bells, but I no longer react to fight or flight signals so easily.

Leaning into fear has had a hugely positive effect on my life. I'm now able to get downstairs most evenings, which has improved my mental health much more than expected. The impact on my family and our communication has been worth testing my limits after all the years of fearing flare-ups.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content in and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen. 

NPS-ALL-NP-01138 NOVEMBER 2023