Exhaustion from MEN1? What Bloods WON’T Flag…
with Senior CBT Therapist & VHL Patient
If you’ve ever spiralled after a scan, Googled symptoms until 2am, or felt like no one gets how exhausting it is to be so proactive all the time, this episode is for you.
Lizzie: Let’s start with the phrase you used in our emails — “when healthy concern becomes unhealthy anxiety.” What do you mean by that?
Ed: When I talk about “unhealthy anxiety,” I mean that point where your focus on health begins to narrow your life. It stops being just concern — it becomes preoccupation. You lose the ability to focus on other areas of life that used to matter. You pull back from relationships, activities, joy. That’s when we know something’s tipped.
But I’d also say that not all obsession is pathological. If you’re channeling your energy into something creative — like you do with this podcast — it can actually be a form of meaning-making. It becomes expansive rather than restrictive. That’s a key difference.
Lizzie: That’s such a helpful reframe. I’ve definitely wondered if what I’m doing is obsessional. But it feels expansive, not draining. It gives me something to pour my energy into.
Ed: Exactly. I often say to my clients: if your response to the condition is life-enhancing, not life-limiting, then you’re on the right track. For example, many therapists I know — including myself — have been through deep personal health journeys. That experience doesn’t diminish us; it can actually inform and enrich our work.
Lizzie: You mentioned purpose. I believe mine is to heal my disease. To release the unease underneath it. That deeper “dis-ease,” that may be dictating how I experience MEN1.
Ed: That’s powerful. With my own condition — there is no cure. So the question becomes: how do I live well with what I’ve been given? What purpose can I make of this?
For me, the illness has shaped my work. I like to think it’s made me a better therapist. It’s created empathy, depth, perspective. I wouldn’t have chosen the condition, but I can still choose what I do with it.
Lizzie: Let’s talk identity. I went from barely thinking about MEN1 to making it my work. Sometimes I wonder — has this become who I am?
Ed: That’s a very real risk. When a diagnosis becomes fused with our sense of self, it can box us in. We begin to see the world — and ourselves — through that lens.
But the key isn’t to eliminate that part of your identity. It’s to expand the picture. I often say to clients: imagine your identity as a pie chart. Your condition is one slice. But it doesn’t have to be the whole thing. Make room for creativity, for connection, for joy.
Lizzie: I’ve also noticed that when I feel most drained, it’s not always the disease — it’s my need to manage the disease perfectly. That pressure is exhausting.
Ed: Absolutely. Perfectionism is one of the most common patterns I see in people managing chronic illness. We believe: If I do everything right, I’ll be safe. But life, and especially illness, doesn’t follow those rules.
I sometimes talk about the Japanese philosophy of Wabi-Sabi — the appreciation of imperfection. In the context of rare disease, that mindset can be life-changing.
Lizzie: And the hard part is that the world often rewards perfectionism. Or at least, it encourages the disilusion that perfect = successful.
Ed: Yes, and that creates a double bind. You’re praised for being diligent, but inside, it’s costing you. Your nervous system is constantly in a state of hypervigilance. Cortisol stays high. And ironically, that stress can worsen symptoms.
So the shift is: can I still care for myself… without demanding perfection? Can I do what matters most and let go of the rest?
Lizzie: Let’s talk about uncertainty. In MEN1, the unknown is constant. Scan results. Tumour growth. Future risks. How can people come to peace with that?
Ed: We have to change our relationship with uncertainty. I think of it like judo — rolling with the energy, not resisting it.
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If we make a demand like “I need to know exactly what’s going to happen”, we suffer. But if we accept that uncertainty is part of life, we can refocus on what we do control — our actions, our relationships, our mindset.
Uncertainty isn’t the enemy. It’s the birthplace of creativity, discovery, joy.
Lizzie: That makes so much sense. But many people I speak to are afraid to ask for help, especially in the early stages of diagnosis. They’re unsure where to turn. Either that or they don’t want to be a bother.
Ed: Yes, that’s a common theme in people with high personal standards — especially those who’ve always been the “strong one.”
But here’s the truth: asking for help is strength. It’s strategic. It’s smart. And it’s often the only way we regain long-term autonomy.
I encourage people to replace the binary thinking — strong vs weak, independent vs dependent — with something more compassionate. It’s not either/or. You can be strong and receive support.
Lizzie: Let’s talk about over-identifying with your illness. You mentioned earlier that if someone took your condition away overnight, you’d wonder who you were. That’s very honest of you.
Ed: Yes. The risk is that we begin to live for the condition rather than with it. It consumes us.
That’s why I ask my clients to zoom out. To ask: What else matters to me? What other roles do I play in life — friend, partner, artist, parent?
You can’t always shrink the illness, but you can grow the rest of your life around it.
Lizzie: That’s such a helpful visual. So much of my own anxiety has come from spirals — late-night Googling, reading letters before the MDT meets. It’s like my mind creates a story before the facts arrive.
Ed: That’s incredibly common. Our brains want to make sense of ambiguity, but sometimes they fill in the blanks with fear. In CBT, we call that catastrophizing.
One powerful practice is discernment: Is this fear based on real evidence — or is it my worry talking? And then, consciously choosing to stay in the present, rather than spiral into imagined futures.
Lizzie: I think that’s why compassion is so key. When I do spiral, I try not to beat myself up. I remind myself that it’s my brain trying to keep me safe — even if the alarm is too loud.
Ed: Exactly. Our anxious responses are survival mechanisms, not personal failures.
So instead of rejecting them, we can work with them. Return to what’s within our control. Things we love to do that light us up, perhaps. You with your podcast, me with my work. Relationships, especially meaningful ones, are at the core.
Lizzie: Before we wrap up, I want to ask: What’s one belief that has most helped you live well with an incurable condition?
Ed: It’s the belief that what I make of this condition is still up to me. I didn’t choose the disease. But I do get to choose how I respond to it, what I create from it, and what meaning I attach to it.
That belief has kept my head above water. And, I hope, helpful to others too.
Ed is a senior CBT therapist and former psychiatric nurse with decades of experience treating OCD, health anxiety, and related disorders. He runs a private practice and brings a unique dual perspective as both a practitioner and a patient living with VHL, a rare inherited condition. You can reach him at: ef_ed@outlook.com
Did you know I’ve stopped all symptoms, surgery and meds in MEN1? Join my free email community and I’ll send you my personal guide.
Medical Disclaimer: This interview shares personal experiences and guest perspectives. It is not medical advice. Always consult a qualified professional before making health decisions.
