Every day is a heatwave
In this blog, lived experience expert Lee Vaughan shares the parallels he sees between surviving the heat and persistent pain.
“If you live in the UK, this past month was an exhausting exercise in survival. We watched the mercury smash June records as we saw temperatures soar above 37 degrees and humidity reach over 80%. For a few days, the entire nation shared a single, exhausting objective: ‘How do I find relief?’
“Our conversations turned into a collective debrief on coping strategies. The internet and TV were awash with trends and hacks to beat the heat. We talked about sleepless nights and the discomfort during, the overwhelming humidity, the compromises we had to make on an hourly basis, and the absolute drain on our physical and emotional energy. Our infrastructure buckled, schools closed, and hospitals declared critical incidents.
“As a country, we were all forced into emergency self management mode. But, as the weather finally began to break, most people got to step back into comfort. The invisible weight, and heat lifted.
“However, for me, and millions of others living with persistent pain, that kind of weight never lifts.
“Self management strategies are an intrinsic part of daily life, and the next ‘heatwave’ could always be around the next corner. And for us, there's no forecast to see it coming unless we know how to look for it.
“Last month, the British public got a temporary, collective preview of what it actually feels like to navigate a life dictated by chronic symptom management. If you felt exhausted by the heatwave, here is the parallel to what living with persistent pain takes every single day.
“1. The constant search for 'relief': last month, everyone was hunting for a reprieve. A fan that actually blew cold air, a shaded room or a cold drink - the supermarkets sold out of ice cream and lollipops. You structured your entire day around trying to lower the temperature for yourself by just a fraction of a degree - by any means necessary.
“The parallel: living with persistent pain is a non-stop, internal search for relief and a minute-by-minute scan for life's ‘booby traps’. We tweak our nutrition, adjust our movement patterns, prioritise sleep, use heat or ice packs and whatever else we have in our personal toolkit, and we constantly have an awareness to practice pacing. We are always adjusting the dials of our environment, searching for just a 5% reduction in discomfort when it comes.
“2. The unseen drain on energy: did you find yourself staring at your laptop or phone in the heatwave, completely drained, unable to focus in moments of absence? High temperatures force the body to work overtime just to maintain homeostasis (internal balance). It leaves you completely depleted before you’ve even started your actual day. Every decision you make, by the minute and by the hour, dictates how much you pour from your already depleted internal capacity reservoir.
“The parallel: pain is an energy thief. Fighting a constant, internal fire requires immense neurological and physical fuel. Chronic fatigue isn't just ‘feeling tired’ - it’s the body running a marathon in the background while you are simply trying to answer an email, hold a conversation or prepare a meal.
“3. Sacrifices and compromises:to survive the heat, many of us had to cancel plans or take a 'rain-check'. We stayed indoors. We closed the curtains. We altered how we dressed, how we travelled, what we ate and how much we drank. We had to say, ‘I can't make it, it's just too much right now.’
“The parallel: persistent pain requires constant boundary-setting. Our early warning systems are always scanning for the next perceived threat. We routinely sacrifice social lives, family opportunities and hobbies because our internal ‘weather system’ won't allow it. Every single day requires a calculated gamble on how much energy we can afford to spend. How do we find the shade in our daily 'heatwave' - or shelter during a 'storm?'.
“4. The mental load of forward planning:you couldn’t just walk out the door last month. You had to think: ‘Do I have enough water? Will the train lines be buckled? Is there air conditioning where I am going?’
“The parallel: we do this every day of the year. Every trip, meeting, or social event requires meticulous risk assessment. Where are the chairs? How long will I have to stand? What is my exit strategy if a flare-up hits?
“If you made it through the heatwave - juggling work, family, and life while your body sweltered - you were being resilient. You adapted, you compromised, and you remained within your limits despite the overwhelming discomfort.
“You were sensible. You chose self care. You made decisions that benefitted you. You chose to say ‘no’. But your environment will always return to normal. Ours won't.
“Those of us with persistent pain don't get a change in the weather forecast. We have to bring that exact same resilience, that exact same bravery, and that exact same complex self-management to Monday morning. And Tuesday. And every day after.
“The next time a patient, colleague, friend, or employee tells you they are managing a chronic health condition or persistent pain, remember how you felt in June when the heat peaked. Remember the brain fog, the overwhelming exhaustion and energy depletion, and the desperate need for just a moment’s comfort when faced with a seemingly insurmountable challenge. Then, remember that they are fighting that exact same internal climate every single day - and they still showed up.
“For people living with persistent pain and long term conditions - every day is a heatwave.”
By Lee Vaughan, lived experience advocate