The Hidden Trap of Illness Identity

Let’s talk about something that might make you uncomfortable, because sometimes discomfort is where the real breakthroughs happen. So what if I told you that part of you might unconsciously be holding on to illness?

Not because you want to suffer, but because being ill has become part of who you are, your identity. I know this might sound provocative, but hear me out. I’m not just speaking from theory. I’ve been there myself.

When I first had to go gluten-free, everyone fussed over me. It wasn’t as common then as it is now, and restaurants didn’t really cater for it. So every time we went out, it was all based around ensuring I could eat.

In that way and others, I can honestly say I got something out of being unwell. I was receiving secondary benefits, attention, care, even a sense of control. It wasn’t intentional, but it was real. Maybe you can recognise this in the friend who always seems to have a cold or allergies, or the one who is constantly watching what they eat due to ongoing digestive issues.

Perhaps you know someone who dominates every gathering with talk of their latest specialist visit or medication change. Maybe that person is you. There are many ways that having a health challenge can provide secondary benefits, but those benefits will never outweigh the challenges, negatives and impacts of being unwell.

Getting rid of that part of your identity could be the key to changing the direction of your health journey. Illness doesn’t just affect the body, it seeps into your mind and soul, shaping how you see yourself and how others see you.

For some of us, being unwell becomes like a comfort zone. Why? because of the secondary gains. Think about it, if being ill means people show you care and love that you might not otherwise receive, wouldn’t part of you want to hold on to that?

If illness gives you a reason to slow down in a world that demands you’re constantly on, isn’t that tempting? Or perhaps your illness provides a sense of community connecting you with others who share similar experiences.

Maybe it’s even that unique identity setting you apart in a world where everyone seems to blend in. These benefits aren’t something you consciously choose, they’re deeply rooted in our beliefs and behaviors.

Fascinating research by Oris in 2016 identified four distinct illness identities, two negative, rejection and engulfment, two positive, acceptance and enrichment, all offer valuable insights. In the context of our discussion today I’m particularly interested in engulfment.

So this is when illness dominates your identity and daily life. If you’re engulfed, you might find yourself defining every aspect of your life through the lens of your illness, as if your condition has become your entire world.

Let’s say, for example, that like me, you live in low-level chronic pain. If I still had an illness identity, it could manifest itself in my life in lots of ways. I could curtail my social life because I can’t go out with friends because I might have a flare-up.

It could stop me dating because I’m not sure I can be a good partner because my pain might be too much for someone else to handle. It could stop me doing things I love, like I used to love gardening, but now I only see it as something that will cause me more pain or the bending and lifting.

It’s a recipe for disaster. It can mean I plan my entire day around managing my pain levels and my medication schedule. It could alter how I see myself. I’m no longer the active, energetic person I used to be.

Pain has changed who I am and stops me from being that person anymore. It could change any future planning I do. Well, I can’t make long-term plans because I don’t know how bad my pain will be in the future.

Living with chronic pain or any other health challenge can quietly and insidiously shape how we see ourselves and how we navigate the world. Well, illness comes to dominate every aspect of your life.

It’s so easy to feel stuck, like there’s no way out. But what if I told you that this isn’t just about how you think or feel? There’s actually science behind why this happens, and understanding it can be the key to letting go of your illness identity and rediscovering who you are beyond it.

So, let’s dive into the science behind this. Because it’s not just about feelings, it’s about how your brain works. When you’re ill, your brain rewires itself to to adapt to that state, neuroplasticity, the brain’s ability to form new neural connections.

It’s like your brain is a super flexible ever-changing network. When you focus on your illness, you’re essentially telling your brain, hey, this is important stuff, and your clever brain listens. It starts creating more connections related to illness, making those pathways stronger.

But here’s the good bit. The same flexibility can work in your favor. Just as the brain can wire itself for an illness identity, it can rewire itself towards health and vitality. And every time you take a step towards wellness, positive thought, a healthy action, you’re creating a new, healthier pathway in your brain.

Think about it like this. Your brain is constantly under construction, and you’re the project manager. The more you focus on health and wellbeing, the more your brain will build in that direction. And it’s not always easy, but understanding the process can be incredibly empowering.

It means you have control over your health journey more than you might have thought. Thank you. So explore how your brain can trap you in an illness identity. And let’s be honest, society often throw fuels on that fire.

We live in a world that can be downright obsessed with illness and not always in a helpful way. Think about the media. How many stories do you see glorifying, brave patients battling diseases? Well, while these stories can be and are inspiring, they do often reduce individuals to their condition.

It creates a narrative where someone’s worth is tied to their ability to fight their illness, as if wellness is a battle to be won through heroic actions. And if the fight isn’t enough, then now you’re a failure.

And let’s not forget the expectations placed on us with health challenges. Society expects you to either be a super patient, constantly advocating for yourself and fighting, or a compliant patient following orders to the tee.

And there’s very little in between. That pressure can make you feel like you’re performing your illness for others. And social media, now that’s a double-edged sword. Yes, online communities can offer support, but they can also become echo chambers, where symptoms, treatments and shared suffering become the main currency.

Even well-meaning friends and family can reinforce illness identity. In Britain, we have a societal norm to ask, how are you feeling? And whilst there’s often asked out of kindness, it means we can unintentionally always start an interaction right there.

And do we then treat people differently because of their condition, inadvertently reminding them of their limitations? It’s important to be aware that various industries profit from people staying focused on their ailments, from pharmaceutical companies to certain segments of the wellness industry.

interested in keeping you engaged with your health challenges. This isn’t to say that all wellness advice is bad, far from it, but it does mean that you have to be discerning and critical about the information you consume.

Question everything. Ask yourself, who benefits from me staying sick and what steps can I take to reclaim my power? Understanding these societal factors isn’t about blaming others. It’s about recognizing the external pressure that can keep you stuck in an illness identity.

By becoming aware of these forces, you can consciously challenge them. It’s about taking control and curating your identity. Now let me share something really interesting about the language we use when talking about illness.

The words we choose have a profound impact on how we perceive ourselves and our health. For example, saying I have x creates a sense of ownership as does I have been diagnosed with x. It asserts that it is yours, part of who you are.

But if you say something like, I’m experiencing X or even better, I’m currently doing X, it’s more transitory. It doesn’t attach the illness to your identity in the same way. It’s a subtle shift in language, but it can really help you see your health challenge as temporary, something you’re moving through rather than something that defines you.

So now let’s talk about how to break free from this hidden trap. The first step is awareness, but we need to start with something a bit more tangible. Think about your health challenge for a moment.

What are you getting from it? Look, I know that sounds odd, but there will be hidden benefits we don’t readily acknowledge. So ask yourself, how does my health challenge influence my daily decisions?

In what ways has my illness shaped my relationships? What aspects of my personality have changed since developing this condition? These questions might feel uncomfortable, but they’re crucial, but understanding how strong your illness identity is.

Then dig a little deeper. How would your daily life change if you didn’t have this health challenge? What aspects of your current situation would you miss? These questions can be quite confronting, but they’re incredibly freeing.

If you’d like some more questions or help with this, then there’s a download available underneath this video. They’re all designed to help you see where illness might be holding you back and where you can start to reclaim your identity.

Now, once you’ve reflected on these questions, it’s time to take the next step towards healing and growth. Now, this journey can be challenging, but also incredibly freeing and empowering. By acknowledging your thoughts and emotion, you are already showing yourself kindness and compassion.

Now, let’s explore some practical ways to build on that self-awareness and move forward. Don’t worry, we’re gonna take this step by step. So the first thing, you need to rewrite your story.

Rewiring those neurons for wellness, not illness. And a great way to do this is journaling. Start writing about what your life would look like without health limitations. What would you do? Who would you be?

Then think about the small steps you can take today to move closer to that vision. For example, if you love to travel more, but can’t because of X, Y, and Z, you can start by perhaps exploring your local area, going somewhere you’ve never been each week or month.

Another powerful technique is visualization. Spending just five to 10 minutes each day, imagining yourself living fully beyond your health challenge. But don’t just visualize the actions, feel the emotion, the freedom, the joy, the vitality, the more senses.

you can use, the more you’re priming your brain to create those neural pathways that align with that vision. Affirmations can also be incredibly helpful. Create statements that reinforce your identity beyond illness, like I am strong and capable, or I am creating a life of health and freedom.

Now these must be written in the present tense to support the brain’s rewiring process. Future tense remains forever in the future. And stick them around the place. Repeat them whenever you see them.

The more, the better. My door frames, mirrors, etc. are often covered in them. The one key aspect here, make sure when you say them, you say them with intention and you mean them. Going through the motions here isn’t going to cut it.

Next, it’s crucial to surround yourself with supportive people. Seek out those who see you for who you are beyond your health challenges. This might mean having honest conversations with friends and families about how you’d like to be supported, or even finding new communities that align with the life you’re working towards.

Lastly, if you are keen to progress faster and have some funds available, you could consider working with practitioners who specialise in belief change. There are some amazing modalities out there that can help shift deeply ingrained patterns and belief, forcing that rewiring we talked about to happen almost instantaneously.

Some of the ones I like are Psych-K, a powerful tool for limiting beliefs at the subconscious level. Belief coding is another great option. It’s designed to help you identify and rewire belief systems that no longer serve you.

You might also want to explore EFT, emotional freedom technique, which combines tapping on acupressure points with cognitive reframing to release emotional blocks. And don’t forget about hypnotherapy.

It’s a fantastic way to access your subconscious mind and reprogram beliefs and behaviours tied to illness. identity. Remember, letting go of your illness identity isn’t about denying your health challenges, it’s about rediscovering who you are beyond them.

It’s a journey of shifting focus, rewiring thought patterns and curating a life that feels aligned with your true self. You’ll be amazed how that can and so often does coincide with a reduction in symptoms.

Those neural pathways aren’t as strong and here’s the most important thing to remember, every small step counts and you’ve got this. Thank you. So I want to share something personal with you. Many of you know that I do Elostanlos Syndrome or EDS.

It’s purported to be a genetic condition that affects connective tissue leading to a range of symptoms like joint pain, fatigue and digestive issues. For many doers, they end up wheelchair bound or even bed bound. I am not. And for many people, they think that means I don’t really have it. So I wanted to share my EDS story. I was told I was doing EDS, diagnosed, in 2004 when I was 25. All I took away from that first meeting was that hypermobility means I needed to strengthen my joints.

I wasn’t in the mindset then to ask questions or do research. So I just got on with my life. Life continued. And I noticed that every time I went to the doctor, they would question whether what I was raising was in any way connected to EDS.

It seemed that if it was, my insurance didn’t pay out and everything would grind to a halt. But at that time, I had bigger health issues to deal with. From an EDS perspective, things came to a head in 2017.

I had gotten my life and health back and I was moving out of London to St. Albans. I started getting really bad abdominal pains. They were insane. They would make me faint regularly. Now, part of the reason for moving was to become a foster carer. And at the end of 2017, I did just that. And that added a challenge of being single, the only adult in a house with two young boys aged under four. Abdominal pains that make you faint is not compatible in that situation.

So I went to the doctor to explore what could be causing this. They immediately referred me to an EDS specialist. Very quickly into that meeting, I realized I knew very little about EDS. The more he said, the more I felt anxious. All these things were likely to come my way at some point. He told me the approach to an endometriosis operation. had had two years earlier had been totally wrong because of EDS. He tutted at a lot of things I told him I did. His mouth hung open at a few things I was able to do. The relevant thing I learnt was that people doing EDS are very sensitive to histamine. They tend to have a lower tolerance and this was likely the cause of my abdominal pain. The move from central London to suburbia had increased the pollen in my immediate environment because I had a garden and that was taking all of my histamine tolerance. So the foods I was eating that were high in histamine, avocados, spinach, were pushing me over my tolerance limit.

At that point I asked him to stop. I politely asked if we could just deal with that one issue. Having been through my recovery and learnt about illness mindset. I knew that if I listened and learnt about all the possible symptoms, impacts and drawbacks, I would quite likely notice them in myself, inadvertently then encouraging them to be present in my experience and likely integrate them into my identity.

And as we know, if we think about it, the chemistry of the body will change to comply with those thoughts, the mirror neurons, neuroplasticity, etc. And I didn’t want to bring on any more symptoms. The specialist was genuinely quite surprised that I didn’t want to know. But then again, he was also surprised by how mobile and active I was. But he sent me some tests around the histamine.

When I got there, everyone looked at me very oddly. I was the only patient there who wasn’t in a wheelchair or using a stick. Yet we had all had the same diagnosis. It was a stark reminder of how differently EDS can manifest and how much our mindset can influence our experience. Again, I had to ask the specialist I saw not to comment on all the things I didn’t have. And I refused to answer questions that were phrased in such a way as to list out symptoms they expected me to have. I felt very sorry for all those people sitting there. I could see that EDS defined their lives. They were engulfed and EDS was their identity.

I know that some may say I am doing myself a disservice, not understanding my condition. But from all I have learnt, understanding things is not actually always the biggest priority not to focus on the potential limitations of EDS, I was actively resisting the trap of illness identity. I was refusing to let a diagnosis define who I was or what I was capable of. But I definitely think that after those trips to the specialists, my pain got worse.

I was having to do more and more to manage it, and keep myself as mobile and active. It was that that led me to seek to take part in Dr Joe Dispenza’s coherence healing research focused on pain that I did in 2020. I wanted to undo the expansion of the condition. Looking back, I realised this was a conscious effort on my part to rewrite my slightly enhanced illness identity and reclaim control over my health narrative.

I am very lucky. It worked. And my pain is less than it has ever been. I am active. walking my dog every day, hiking mountains on holiday, taking part in adrenaline activities that you have to be able to trust your body to do.

Deciding who and what you want your life to be about is far more important. And you know what? Making that decision and taking those actions made all the difference.

Yes, I am still doing EDS and yes, it presents challenges. I do some pain management every day and there are things I choose not to do now. But it doesn’t define who I am and it hasn’t progressed in ways that a lot of EDS accounts on social media describe.

I’m still Charlotte.

By actively curating my identity, by refusing to let illness take over, I’ve been able to thrive despite my diagnosis. And that’s what I want for you too. I want you to know that no matter what health challenges you’re facing, you have the power to choose who you become.

So we’ve talked about strategies for recognising and letting go of your illness identity. We’ve explored ways to reclaim your story and curate a life that’s truly yours. But here’s a question I want you to really think about.

Are you worried about what might happen if you become healthier? It’s not that you want to be unwell, but maybe you’re concerned about what your life might look like without the familiar structure and support system that your health challenges have required you to create.

Perhaps you’re worried that wellness means having to face aspects of your life that you’ve been avoiding, whether it’s taking responsibility for things you’ve been blaming on your health, confronting difficult emotions or making tough choices about relationships or career paths.

Maybe you worry about setting new boundaries. What’s your get out of jail free card will be now. And then, what if it doesn’t last? What if you don’t like the version of yourself? What if your friendships change?

What if, what if, what if, what if, what if, what if? A whole lot of that is unknown. It’s a blank canvas. Is that exciting or scary? It all depends on your perspective. And which aspects of the void you focus on.

It’s worth reflecting on all of these what ifs for a moment. This isn’t about conscious choice. If only life was that easy. It’s about bringing subconscious anxieties to the surface. Acknowledging them allows you to rewrite their impact on you.

And I can tell you, for all the examples above, they will happen. And you will be able to choose how they change. And you’ll love some bits, not like others. And have to change them again. But ultimately, you will be in control of designing and creating your new identity, and therefore the experience of life that you have.

You are so much more than your health challenges, which is where our philosophy at the Alchemy of Being about curating yourself rather than finding yourself comes into play. It’s much more about what you focus on than what you already have or don’t have.

It’s time to let go of old stories, step up to that blank canvas, and create what you do want. At the Alchemy of Being, we believe you already have everything you need within you. It’s just about choosing which parts to focus on.

Your health challenges don’t define you unless you let them. Remember, you are not them. You are so much more. And letting go of an illness identity can be one of the most liberating things you will ever do.

Thank you for joining me today for this important conversation. If this resonated with you or even challenged you, I’d love for you to share your thoughts below or reach out directly. If you feel this would resonate with someone you know and love, then share it with them.

Let’s start rewriting our stories together. Thank you.