Meet the Founder

I’m Punteha van Terheyden, Founder of Living In Pain.

After 25 years of navigating chronic illness in healthcare systems that were not built for me, and managing daily life alongside persistent pain, I had a realisation. There wasn’t something wrong with me or my pain; there was, in fact, a failure in the medical support available, the literature, media, and the infrastructure of society to reflect the reality of living and coping with chronic pain.

Waiting lists are too long, advice is often too clinical, GPs are underprepared for managing us, health pathways are overly formulaic, or disconnected from the practical challenges people like me face daily and over the long term. Pain is not a one-size-fits-all experience, so its solutions cannot be uniform.

There have been times when I’ve been dismissed or treated as non-compliant because my body cannot tolerate physiotherapy without further injury. That is not a moral failure on my part, but a reality for the small percentage - around two per cent of the people like me with Ehlers-Danlos Syndrome - who cannot tolerate targeted physiotherapy. I also have endometriosis, PMOS, adenomyosis, rheumatoid arthritis, disautonomia and MCAS.

Alongside my lived experience of managing these complex conditions and the challenges of actually being diagnosed in the UK, I have 18 years of journalism expertise, where I have shaped useful content for large audiences across digital and print magazines through honest storytelling, news reportage, impactful campaigns and thoughtful review content.

I created Living In Pain so people like me have a dedicated space for support, which is especially helpful when pain zaps your energy and hope. I’ll be honest that there have been times when I have questioned how on earth I am supposed to continue to work, parent and simply still be here when my suffering is so high, and I feel like I am not getting access to the medical help and support I need.

In those moments, I went online and found solace in the comments sections of TikTok, or the long threads filled with people in the same position as me on Reddit or Substack blogs I follow. What I found hidden in the despair was a community of people who are living experts in real-life pain. Sometimes, their throwaway comments sparked an avenue of investigation for me or set me thinking differently about the challenges I faced. But having to deep dive into unofficial channels isn’t always helpful for everyone.

That’s why I’ve created Living In Pain. I founded this site on the belief that people with chronic pain deserve verified and useful information that respects their intelligence, autonomy and limits without the layers of unhelpful and judgmental commentary that can arise in these spaces. This Living In Pain community comes with a commitment to practical support, trauma-informed storytelling, and transparent editorial standards that bring managing pain and chronic illness to the forefront.

Until there is a cure for all of the conditions that cause chronic pain, my goal for Living In Pain is simple: to help us live as fully and as well as possible, on our own terms.

Learn how our Editorial Principles guide how we do this.