When a health condition becomes your identity

Receiving a diagnosis of a health condition, particularly chronic health conditions, can be extremely difficult for anyone. The adjustment process can take a long time, as the person learns more about their condition, finds ways to manage it or even put their symptoms in remission, and learns how to navigate life with the condition. However, for many of the clients I have spoken to, and for myself at one point, there is also the risk that the person begins to lose their identity to the condition. 

Typically, our ‘identity’ is all the things that make us us – our likes, dislikes, personality traits, characteristics, strengths, passions. Our identity tends to be fairly stable, and it is what makes us different from everyone else, and is a big part of where we ‘fit’ in a social setting. For example, part of your identity might be your humour, or the fact that you care so much about others, or your ability to just say it how it is, or that you are great at drawing. 

For some people, when receiving a diagnosis of a health condition, they can find that over time, sometimes unnoticed, they begin to see themselves as the health condition. Much of their thoughts and actions relate to the condition (not eating this, not being able to do that), and this of course can impact on the other parts of their identity – for example, if being sociable and funny is a part of your identity but now you are consumed by concerns about your health and feeling different from everyone, it would be very hard to carry on being sociable and funny. This can lead to a sense of the person ‘not feeling themselves’ and people talk about ‘losing themselves’ to the condition. It’s almost as if their health condition becomes bigger and bigger, and their identity and other parts of their life get smaller and smaller. 

In my experience, there are a few common things that can increase the chances of our health condition becoming our identity. Firstly, if we find that all we think about is our health condition, then it makes sense that we feel like we’ve lost ourselves, as there is just no mental capacity to think about anything else. It can be helpful to spend some time thinking about who you were before the health condition, what did you like doing, how did you tend to think about things? How can we start to incorporate some of those things back into our lives?  You can also think about what type of identity you would like to have, even with a health condition. 

Secondly, being aware of how we talk about ourselves and our health is so important. If you find yourself telling everyone you meet about your condition, take a moment to reflect on whether this is actually helping you, or perhaps whether it is actually ensuring that the health condition seeps into every aspect of your life and keeps you feeling different from everyone around you? If you do find it helpful to tell people, then that’s ok, but for many, the regular talk about the condition can be unhelpful for them. 

Thirdly, be careful of who you spend your time with. It is very common for those with health conditions to join condition-specific forums such as Facebook groups. This is of course well-intended – you join these as you are looking for advice on ways to manage, or you want to be around people who get it. However, all too often what actually happens is that you now spend hours scrolling through reems and reems of posts that mainly involve fear, anxiety, talk about symptoms and conflicting advice. The other issue this can cause is that people can spend a long time on these groups, therefore missing out on other parts of their life. It can be helpful to really assess how you feel before and after being on these groups – are they actually helping you, or are they making you feel more scared and more hopeless? We know that for almost every health condition, stress can absolutely exacerbate symptoms, and yet in our quest for help, we can unintentionally put ourselves under more stress and anxiety. 

I am not at all saying that wanting to be around people who get it is a problem – not at all, I think in the right format, this can be helpful. But I do find commonly that for many people, this isn’t the kinds of groups they are on, and this can lead to a further sense of being hopeless and scared. So it can be helpful to spend a bit of time reflecting on what you might be getting from such groups, and whether they are helping or perhaps keeping you feeling stuck. 

The issues I’ve outlined in this article are just a few of the very common things I see in my practice. I have also been in the exact same place – receiving a diagnosis and then completely losing myself to it and feeling different, alone and consumed by it all of the time – and this was largely because my attempts to cope were actually increasing my anxiety and fear, making the health condition an even bigger part of my life, and in doing so chipping away at my identity. 

And this is not to say that people should just ignore the symptoms of their health condition and pretend its not happening, or get annoyed with themselves for worrying about it. Often, symptoms of chronic conditions can be very difficult and can mean that you need to adapt some parts of your life. What I am saying though, is that in my experience, the psychological impact of the condition can be underestimated and can for some people cause more distress than the actual condition, or at least make it far more difficult for them. 

If you resonate with this article, and feel you have perhaps lost your identity to a health condition, know that you are not alone. In my experience, spending some time getting psychological support focused on the adjustment process, helping you to identify the impact it has had on you, and ways to cope with a condition whilst still living a meaningful life with identity can be invaluable. 

Dr Theresa Comer, Clinical Psychologist.