Why Hot Weather Makes My Chronic Illness Symptoms Worse (And What Helps Me Cope)
When the weather forecast predicts sunshine and soaring temperatures, most people seem excited.
My social media feeds quickly fill with pictures of beach trips, family barbecues, picnics in the park and people making the most of the longer days.
A few years ago, I would probably have felt exactly the same.
Now, my first thought is usually, "How am I going to get through this heat?"
Living with ME/CFS and fibromyalgia has completely changed my relationship with summer. While I still appreciate bright blue skies and the sound of birds singing outside, heatwaves have become something I quietly dread.
It's difficult to explain to someone who hasn't experienced it. They often assume I'm simply uncomfortable because it's hot. The reality is that hot weather can make many of my symptoms noticeably worse, leaving me feeling completely drained and exhausted before the day has barely begun.
This is simply my own experience. Every chronic illness is different, and everyone experiences symptoms in their own way. But if you've ever wondered why summer feels so much harder when you're living with a chronic illness, you certainly aren't alone.
When My Body Simply Can't Cope with the Heat
One of the hardest parts about living with chronic illness is learning that my body doesn't always respond the way I expect it to.
On a hot day, I can feel as though my body is working overtime just trying to stay cool.
Instead of enjoying the sunshine, my energy seems to disappear even faster than usual.
The overwhelming fatigue that already comes with ME/CFS becomes heavier.
My fibromyalgia pain often feels more intense.
Brain fog seems thicker, making it difficult to concentrate or even follow simple conversations.
Sometimes I feel dizzy or lightheaded, and even walking around the house can suddenly feel like a much bigger task than it normally would.
It's almost as though every symptom I already manage quietly throughout the year is turned up another level.
Heat Doesn't Just Make Me Feel Hot
One thing I've realised is that heat doesn't simply make me feel warm.
It affects everything.
Simple daily jobs become much harder. If I push myself because I don't want to miss out on family activities, I often pay for it later.
Sometimes that means needing several days to recover from something that other people would barely think twice about.
Living with chronic illness has taught me that every decision comes with an energy cost.
Hot weather simply makes that cost much higher.
Learning to Pace Even More During Heatwaves
Pacing has become one of the most valuable things I've learned since becoming ill.
I've written before about how important pacing is when living with ME/CFS, and during a heatwave it becomes even more essential.
If I know the temperature is going to be high, I try to reduce what I expect from myself.
Jobs that can wait until the evening stay on my list.
Appointments are planned carefully where possible. I avoid going outside alltogether.
The hardest lesson has probably been learning that slowing down isn't giving up.
It's protecting tomorrow's energy as much as today's.
The Little Things That Help Me Stay Cool
Over the past few summers, I've gradually found small things that make the heat a little more manageable.
None of them magically remove my symptoms, but together they can make a noticeable difference.
Some of the things I rely on include:
Keeping curtains and blinds closed during the hottest part of the day.
Opening windows once the temperature starts to drop in the evening.
Using fans to keep the air moving.
Wearing loose cotton clothing.
Drinking plenty of cold water throughout the day.
Keeping reusable ice packs in the freezer.
Taking cool showers when I begin to overheat.
Resting before I feel completely exhausted rather than waiting until I crash.
I've also learned that it's perfectly okay to spend more time indoors when everyone else seems to be outside.
Years ago I would have felt guilty.
Now I simply recognise that my body has different needs.
The Emotional Side of Summer
I think one of the most difficult parts isn't always the physical symptoms.
It's watching life carry on around you.
Children are off school.
Friends arrange days out.
Families head to the coast.
Social media fills with smiling faces enjoying the sunshine.
Meanwhile, I'm often sitting in front of a fan, trying to cool down enough to feel human again.
There have been moments when I've felt guilty for not joining in or frustrated that my body simply won't cooperate.
Living with chronic illness often means grieving little things that other people barely notice.
Summer has become one of those things.
I've learned that it's okay to feel disappointed.
It's okay to acknowledge that chronic illness changes the way you experience different seasons.
Finding Different Ways to Enjoy Summer
Although heatwaves are difficult, I've realised that summer doesn't have to be all or nothing. I still find ways to enjoy it.
Early mornings are often my favourite time of day.
Sitting quietly in the garden with a cold drink before the temperature climbs.
Listening to the birds.
Watching the butterflies.
Taking photographs of the dogs enjoying the sun (charging their battery up).
Some days, simply opening the back door and enjoying a few peaceful minutes outside is enough.
I've stopped comparing my summer to everyone else's.
My version may look quieter, slower and much gentler, but that doesn't make it any less meaningful.
Be Kind to Yourself During Hot Weather
It can be incredibly frustrating when your body reacts differently to everyone around you.
Try not to judge yourself against people who aren't dealing with the same challenges.
Rest when your body asks for it.
Cancel plans if you need to.
Celebrate the little victories, even if that's simply getting through another hot day without pushing yourself into a flare.
I've spent a long time learning that listening to my body isn't weakness.
It's one of the kindest things I can do for myself.
Summer may never look the way it once did, but that doesn't mean it can't still hold moments of peace, happiness and gentle joy.
About me
I am a married mother of four children. One of those four children is our granddaughter, for whom we are SGO (legal guardians)/kinship carers. I run a small business and enjoy writing, so I blog. My blog focuses on my family life as well as my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia. Oh, and I am only in my mid-40s.
Frequently Asked Questions
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For me, hot weather seems to make my body work even harder than usual. Living with ME/CFS and fibromyalgia already means managing fatigue, pain and brain fog, but when the temperature rises, those symptoms can feel much more intense. I often feel more drained, dizzy, heavy and overwhelmed during hot weather, especially during a heatwave.
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In my experience, yes, hot weather can contribute to a flare up. If I push myself too much in the heat, I often find that my fatigue, pain and brain fog become worse afterwards. Sometimes it can take me a few days to recover, which is why pacing becomes even more important during summer.
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Fibromyalgia affects everyone differently, but I personally find that hot weather can make my pain and fatigue feel worse. Heat can also make sleep more difficult, and poor sleep often has a knock on effect on pain levels, energy and brain fog the next day.
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For me, hot weather makes my ME/CFS fatigue feel much heavier. My energy drains faster, simple tasks feel harder, and I have to be even more careful with pacing. During very hot weather, I try to lower my expectations, rest more often and avoid doing too much during the hottest part of the day.
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The small things that help me most are keeping curtains closed during the hottest part of the day, using fans, drinking cold drinks, wearing loose clothing, using ice packs, taking cool showers and resting before I feel completely wiped out. None of these things make the heat disappear, but they can make it feel more manageable.
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During a heatwave, I try to keep life as simple as possible. I avoid going out in the middle of the day, move anything non urgent to the evening, keep hydrated and allow myself to rest without guilt. I have learned that coping with hot weather and chronic illness often means doing less, not trying to push through.
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Hot weather can be tiring for anyone, but when you live with chronic illness, it can feel completely draining. For me, my body already has limited energy, and the heat seems to use up even more of it. This can make everyday tasks feel harder and leave me needing more rest than usual.
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Yes, but I have had to change what summer looks like for me. I may not be able to enjoy long days out in the heat, but I can still enjoy quieter moments, like sitting in the garden early in the morning, watching the birds, taking photographs or enjoying a cold drink in the shade. Summer may look different now, but it can still hold gentle moments of joy.
Disclaimer:
These FAQs reflect my personal experience of living with ME CFS. I am not a medical professional, and this is not medical advice. Always listen to your own body and seek professional support where needed.