You’re Not Alone: Why Patient Support Charities Matter

Living with paruresis (shy bladder syndrome) can feel incredibly isolating. It's one of those hidden conditions that affects daily life in big ways. Yet most people have never even heard of it.

When you finally build up the courage to speak to a health professional, it can be very disappointing if you leave without the support or understanding you were hoping for.

Only one in ten people are signposted to patient support charities by their doctor or nurse. Although the help those charities give can be life changing.

These organisations offer so much:

💬 Judgment-free support

📚 Helpful, trustworthy information

🤝 A community of people who truly get it

🩺 Campaigning for better awareness and care

Some of these organisations are very big well-known names – Mind, Parkinsons UK, MS Society, Cancer Research UK. And of course UK Paruresis Trust (UKPT) is also a patient support charity.

We may not be a big name in the charity world, but we can offer information and support, a community that understand what paruresis sufferers go through, and volunteers who campaign for better awareness.

You are not alone. There's a community out there that understands exactly what you're going through. And wants to help.

At UK Paruresis Trust, we know that most people with paruresis find us through internet searches, rather than through referrals from health professionals. This means that many people go through months, even years of confusion, embarrassment and isolation, before discovering that help exists. That's frustrating.

It's difficult to understand why health professionals don't point people our way more often. After all, we're immersed in this issue day in, day out. We have all experienced paruresis ourselves. We offer lived experience, practical advice through our workshops and website, and long-term support. All things that time-strapped clinicians often can't provide in a short appointment.

And yet, that simple signpost… "Have you heard of UK Paruresis Trust?" could open the door to real understanding and progress.

That's the power of patient support organisations. They fill in the gaps. They empower you. They help you feel in control. They show you how to know your enemy.

So if you're dealing with paruresis, or think you might be, please don't wait for someone else to bring it up. You've already taken a huge step by reading this.

Explore our website. Reach out. You'll find understanding, tools, and people who recognise exactly what you're going through.

If you are a health professional reading this: signposting really matters. One small nudge toward a patient support charity can change a life. If in doubt take a look at our CPD Training for health professionals.

Find out the difference a referral from a health professional to UK Paruresis Trust can make.

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