You are not your diagnosis

 In Adults, Chronic Illness, Emotional Impacts, Identity

When you live every day with a chronic condition, it’s easy to forget that you are not your diagnosis.

  You are not your diagnosis | Hypermobility Connect

Your diagnosis does not define you.


It’s very easy to get caught up in the diagnosis being your identity. But deep down, most of us know that we are more than that.


You are a person first and foremost. Just like everyone else. You just happen to have some stuff going on that makes life a lot more challenging than you would wish.

You are not hypermobilIty.


You are not Ehlers-Danlos Syndrome.


You are not Loeys-Dietz Syndrome.


You are not Marfan Syndrome.


You are not a HypermobilIty Spectrum Disorder.


You may have one of these conditions, but it is not you, you are not it. You need to put some distance between yourself and that label.



Well, what happens if your label changes?  Do you become someone else? Do you lose your identity?


If your identity is so fused to your diagnosis, then yes, you do lose your identity and your sense of who you are and where you fit into this world. But if you know who you are underneath your diagnosis and your diagnosis or label changed, you don’t lose yourself. You know who you are. The only thing that changes is the way you manage your condition.


In my opinion, that is all a diagnostic label is good for anyway. It’s only useful for helping to plan management and make decisions about your care. After all, any label is simply the culmination of a string of criteria aimed at helping to narrow down answers to questions. Those criteria don’t describe you. They don’t tell me who you are.


They describe a bunch of things that happen to your body, which happens to be the vessel that carries you through life. They describe processes that are happening to our physical body.


They do not even touch on who you are.


They do not come near describing your personality, or your soul, the essence of who you are; they couldn’t possibly.


And it’s for that very reason that you need to remember that you are more than your diagnosis.


You are a beautiful, extraordinary human being with a unique personality, life, interests, goals & aspirations; you are an individual. You are not diagnostic criteria. You cannot be summarised by diagnostic criteria. And just like the stripes of a zebra, no two of us are the same.


The criteria describe the common observations of our zebra ‘dazzle’. But every dazzle is made up of individual zebras that live each day knowing that they have the dazzle for safety in numbers, but they are entirely separate from others.


They are not defined by the dazzle; they are protected by it.


So too are we protected by our Hypermobility community; yet at the same time, we are unique, individual and free to be who we are apart from it… if only we choose to be.


Are you letting your diagnosis define you? What can you do today to break free from its hold? Let us know in the comments.

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