Not all pain can be seen, yet its effects can reach into every part of life. It may mean cancelling plans, stepping back from hobbies, or even stepping back from work – all changes that people don’t always associate with pain. And alongside these practical challenges come complicated emotions that can be just as difficult to carry.
September is Pain Awareness Month -an opportunity to shine a light on the struggles people may encounter when pain becomes part of their lives. It’s also a chance to raise understanding of conditions like AKU, where pain can be one of the most common and challenging symptoms.
To mark the month, we hosted an “Easing Aches and Pains” coffee catch-up. It was an open space for people to drop in, share as much or as little as they wished, and exchange tips, experiences, and questions. The conversation touched on many aspects of living with AKU pain – from the different types of pain people experience, to how it affects hobbies and daily tasks, the times of day when pain feels worst, coping strategies, mental health, and more.
What quickly became clear was that no two people experience AKU pain in the same way. For this blog, we’ve brought together voices from our AKU community to share a snapshot of the many ways pain can be experienced and you may even find something here that helps with your own pain management.
Practical tips from people with AKU are highlighted in blue, while personal quotes are shown in purple.
Pain Without a Pattern
How do people with AKU experience pain? The answer is: very differently.
In our coffee catch-up, many agreed that mornings can be the hardest time of day. After a night of rest, joints often feel stiff and slow to loosen. One person described how it could take “an hour or two for it to settle,” while another said their pain was more sudden and severe. Even something as simple as a sneeze could bring sharp, knife-like pain that was hard to explain to others.
People also spoke about the kinds of pain they live with. Some spoke of burning nerve pain, others of numbness, or a deep ache in the joints. One person shared that standing still was the hardest to bear, while another noticed pain on flat ground when walking, yet could still manage activities like hiking uphill, cycling, or swimming with little difficulty.
These examples show how pain doesn’t always follow the patterns we might expect, and why it’s so important to listen to each individual’s experience.
Making Life more Manageable
Just as AKU pain shows up differently, so too do the ways people find relief. Some spoke about how movement helps – gentle stretching, yoga, or light exercise to ease stiffness and keep the body flexible. Others said pacing was key, learning to break tasks into smaller steps and rest before pain flares up.
The conversation also turned to the mind. Mindfulness and relaxation, even just a few minutes to pause and breathe or picture a calming place, were described as ways to reduce the intensity of pain and regain a sense of control.
Simple adjustments were often just as valuable. Hot showers to loosen stiff joints or carrying a lightweight chair to rest during longer walks, were examples of small changes that make daily life more manageable. Each person seemed to have their own “toolkit,” built from what worked best for them.
One person introduced something new to many in the group: grounding. Grounding is directly touching the earth, which is suggested to put the body into a healing state. This can involve walking or sitting barefoot on grass, sand or soil; using grounding mats, sheets or footwear indoors; or swimming in natural bodies of water. People often describe grounding as a way of helping the body feel calmer and more balanced. It may not work for everyone, but for some it offers real comfort, and it’s something anyone can try, whether living with a chronic condition or not.
The Emotional Side of Pain
Beyond the physical impact, living with pain can take a emotional toll. It can make socialising difficult, limit hobbies, or force people to step back from work. This isn’t always visible to others, but it’s deeply felt by those living with AKU.
Pain is never just physical – it affects mood, independence, and confidence too. Feeling misunderstood or dismissed can make the weight of pain even heavier. That’s why talking about it openly, and recognising the emotional as well as the physical impact, is so important. In the session, people spoke candidly about this connection. One person reflected on how long it had taken them to learn the importance of resting, even when it felt frustrating. Another described the unpredictability of their pain, explaining how difficult it was to spot any clear pattern from one day to the next. Others shared that learning to accept pain was something they were still working on. The conversation also developed to the close link between chronic health and mental health, recognising that living with AKU brings challenges that can make it hard to always stay positive.
As pain specialist Dr. Andrew Jones from the National Alkaptonuria Centre explained in a recent AKU Society session: “Pain is not only a physical sensation – it is also an emotional experience. It shapes identity, confidence, and quality of life.”
And perhaps most powerfully, he added:
‘I’d almost rather we stop talking about pain and start talking about suffering. Because when people feel like they can live fully despite pain — when they feel supported and understood — that can be more important than pain relief itself.’
These words capture that AKU pain is not just about the body, but about the whole person and the emotional toll it carries can be just as heavy. Pain Awareness Month is about visibility and empathy. That’s why coming together as an AKU community is so important: it gives people the chance to share problems openly, offer advice, and remind each other that no one understands AKU pain better than those living with it.
The message from our community is clear: pain in AKU has many faces. There is no single story, no single solution, and no single way to cope. But every experience matters.