You Don’t Know What You Don’t Know

August 20, 2026

Drawing on her own experience of therapy and EMDR, Facial Palsy UK CEO, Karen Johnson reflects on the ways she learned to anticipate other people’s reactions, second-guess what they were thinking and adapt to situations she hadn’t realised were affecting her mental health.

My partner’s dad passed away a few weeks ago. He was a bus driver in Peterborough for many years, and so many people remember him, because he was a genuinely lovely man. I don’t remember him, despite catching Peterborough buses all the time as a teenager. I dreaded catching the bus, because it always seemed to be bus drivers who called out “cheer up love, it might never happen.” I hadn’t really thought about it before, but I realised today that I used to keep my head down as much as possible when boarding, worried someone might comment on my face. Being born with facial palsy, I didn’t realise how much I’d learnt to adapt, to pre-empt situations that might never happen.

I’ve had a lot of therapy this year, particularly Eye Movement Desensitisation and Reprocessing (EMDR), and it’s been life-changing. When you’re used to living with a condition, it’s hard to know what’s you, and what’s a reaction to things you’ve never examined. One of the biggest things I learnt was that I had become something of a mind-reader, always assuming what other people were thinking rather than dealing with the facts in front of me. Learning to stop myself going down those rabbit holes of negative thought has been one of the most helpful parts of the whole process. It took the right therapy (for me) to break a cycle that had been running for years. I’m a firm believer that we have to push for better mental health support and tackle these problems before you start to believe they’re just part of who you are.

That doesn’t mean assuming everyone with facial palsy needs mental health support. Some people will manage okay without it. But everyone deserves the chance to ask, and to know they’d be taken seriously if they did. Most people are never even offered that chance.

What if someone had asked, from a young age, whether I was okay? What about the years of confusion and frustration I didn’t have the words for? What if someone had raised the idea of mental health support early on, rather than waiting until I went looking for it myself, once there was already a problem? You don’t know what you don’t know. I didn’t realise how much facial palsy was shaping my personality. There was no one to talk to.

I’ve had therapy a few times over the years, and most of it didn’t really help. I never thought I’d be one of those people who’d call therapy life-changing, so if you’ve tried before and it didn’t work, don’t give up hope.

Someone electing to have cosmetic surgery enters a system where professional guidance says clinicians should consider their psychological state and refer for support where needed [1]. It’s guidance rather than a legal requirement, and surgeons have told us it should be mandatory but currently isn’t. Someone with facial palsy, a condition they didn’t choose, and one with a well-evidenced psychological impact [2], doesn’t have anything equivalent, not even at the level of guidance. FPUK has published recommendations for supporting the psychological wellbeing of children and adults with facial palsy [3], but it hasn’t reached all the clinicians who need to see it, and there is no formal mechanism to make sure it does.

Support exists where a specific centre happens to provide it. Otherwise, you have to find your own way into general mental health services that may not understand your condition at all.

The same gap exists at the point of diagnosis. Anyone who comes into contact with a person with facial palsy at that stage, whether a GP, a midwife, a consultant, or another clinician, should have a duty to at least mention that psychological support exists and where to find it. That doesn’t mean a formal referral, or assuming support is needed. It could be as simple as a line in a diagnosis conversation, or a leaflet alongside the clinical information. At the moment, whether that happens comes down to the individual professional in the room, not the system. You don’t know what you don’t know applies here too. A clinician who has never been shown the psychological evidence, or the resources that exist, is not going to think to mention them. That’s not a failing of any individual professional. It’s a gap in what they’ve been given to work with. Changing that means working with the organisations that set guidance for GPs and clinicians, so mentioning support becomes standard, not left to chance. We’re working with other charities supporting people with visible differences on how to influence change within the NHS. We all agree psychological care must be available throughout the patient journey, not treated as optional.

Our psychological interventions resources currently cover peer support, self-help guides, CBT and counselling. We haven’t yet included EMDR, as it’s typically used for trauma-focused work rather than the broader range of difficulties those resources cover. But we know some of you will have your own experiences with it, or with other types of therapy.

We’d like to hear what’s helped you, and what you’d tell someone who’s putting off asking for support. Get in touch at postbag@facialpalsy.org.uk and we may share your experience in a future newsletter.

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