Hot weather can make symptoms harder to manage when you live with a chronic illness. This guide offers practical ways to stay cool, conserve energy, and look after your health during a heatwave.
Not everyone with a chronic illness struggles in the heat, I actually love summer myself. But as someone with autonomic dysfunction and a feeding tube, I know how quickly things can tip into imbalance, especially when it comes to electrolytes or fatigue.
Why Hot Weather Hits Different When You’re Chronically Ill
Many of us look forward to summer, but heatwaves can be brutal when you live with conditions like POTS, ME/CFS, EDS, MS or fibromyalgia. Rising temperatures often bring a flare in fatigue, dizziness, pain, and brain fog. If your symptoms are already tricky to manage in normal weather, a sudden spike in heat can knock everything off balance.
The thing is, you’re not imagining it. There’s evidence that extreme heat makes chronic symptoms worse, particularly for people with autonomic dysfunction, circulation issues, or inflammation-related conditions. And yet, life goes on. There are still errands, appointments, family visits and that sense that we “should” be enjoying the sunshine.
So here’s your reminder: you don’t have to love summer. And if you're feeling worse, it’s not a personal failure, it’s your body responding to stress. Let’s talk about how to get through it with less struggle.
What A Heatwave Does to the Body
Heat can affect people in different ways depending on their condition. For example:
Keep it somewhere easy to reach on flare days, like your bedside table or sofa basket.
Managing Fluids in the Heat
Staying hydrated is crucial in a heatwave, but it can easily fall by the wayside when you're dealing with fatigue or brain fog. Whether you hydrate by mouth, tube, or line, finding ways to increase fluid intake throughout the day can help ease symptoms like dizziness, headaches, and fatigue.
If you struggle to keep up with fluids, try:
· using a visible bottle or marked container so you can track intake
· setting reminders on your phone or using a hydration app
· linking fluid intake to habits, like every time you stand up or check your phone
For those who use feeding tubes or central lines, your care plan might allow for extra water flushes, additional fluid bags via your pump or line, or scheduled boluses. Speak to your dietitian or medical team about safe ways to adjust your routine during hot weather, small tweaks can make a big difference.
Electrolyte support (like oral rehydration solutions or prescribed fluids) can also be helpful. Always check with your team if you’re unsure what’s right for your condition.
Click here to find more tips to stay hydrated on the NHS website.
Pacing Social Time in The Summer
It’s so easy to overdo things in summer. Invitations pile up; picnics, parties, festivals, weddings. But the heat, noise and energy drain can wipe you out.
Here’s how to stay in your comfort zone:
· Say “maybe” instead of yes or no straight away. Give yourself time to check in with your body.
· Suggest cooler alternatives, a shady park chat, iced tea indoors, or video call.
· Leave when you need to. You don’t need to explain your exit, a simple “I’m flagging but it’s been lovely” is enough.
· Avoid back-to-back plans. If you’ve got an event, try to leave the next day clear for recovery.
Summer isn’t a deadline for joy. It’s just a season, and you’re allowed to move through it on your terms.
How to sleep when it’s too hot
Sleep can take a serious hit in a heatwave, especially with fatigue and pain already in the mix. Try:
· Lightweight cotton bedding (ditch synthetics)
· Putting a frozen bottle at your feet
· Sleeping in a cool room, even if that means moving to the floor or spare room
· Showering in lukewarm water before bed (cold can shock the system)
Some people also find white noise or a gentle fan sound helpful for sleep if windows are open.
If you live with others…
Living with flatmates, family or a partner? Talk to them early about what heatwaves do to you.
You could say: “When it’s this hot, my symptoms really flare. I might be more wiped out than usual or need the fan during the day. I hope that’s okay.”
You can also ask for help setting up your cool-down space or taking over some errands if going outside isn’t safe for you.
What If You Can’t Avoid Going Out?
If you absolutely have to be out during a hot spell:
· Go early or late in the day
· Wear loose, breathable clothes
· Bring a spray bottle and rehydration drink
· Walk in shade, avoid direct sun where possible
· Know where your nearest cool indoor spaces are (libraries, shops, cafés)
· Listen to your body; if you feel dizzy, nauseous, or your heart is racing, it’s time to rest.
If you feel unwell and can’t cool down quickly, seek help. Ring 111 or speak to your GP if symptoms escalate.
Final Thoughts
There’s no prize for pushing through when your body’s struggling. Staying well in summer isn’t about perfection, it’s about giving yourself permission to do things differently.
Shut the blinds. Cancel a plan. Sit in the shade with a cold drink and something familiar. Your body is working hard, and you’re doing your best.
You’re not lazy. You’re adapting. And that takes strength.
Thank you so much for taking the time to read my blog and visit my website, it truly means the world to me. If you’ve found my posts helpful or inspiring, please consider liking, commenting, or sharing my story to help spread awareness. If you’re able to, a donation to my JustGiving page would go a long way in supporting my journey towards private medical treatment. Your kindness and support make all the difference, and I’m deeply grateful for every bit of it.
