A recent thread by @HannahPearl_1 on twitter questioned the suggestion from someone that “it’s important not to be defined by” our illness. Hannah went on to say she understood what the person meant but didn’t feel able to agree.

This got me thinking. ‘Defined by” is a term that crops up a lot in #ChronicLife circles & forums online. People tend to be either against it as somehow limiting, or in favour of it because our illness affects every aspect of our lives.

But what does ‘defined by’ actually mean? I’ve had a trawl through Merriam Webster online looking at meanings & synonyms to try & pin down a definition, and it’s a little slippery. But I love language so let’s give this a go!

Defined has a number of uses which vary the meaning:

• to draw or make apparent the outline of
• to mark the limits of
• to point out the chief quality or qualities of an individual or group

It’s the second & third definitions I’m interested in here, because I think this may be where the divergent opinions around the phrase derive from. Let’s have a look at both…

To mark the limits of

If one applies this to living with a chronic condition I would take ‘defined by’ to mean that we acknowledge our illness affects us in ways that inhibit the way we live our lives. For me this meaning absolutely applies to my life. Inspiration porn often tells us nonsense like “the only disability is a bad attitude”, and this simply isn’t true.

Current popular ideology leans towards telling everyone they can be anything, do anything and there are no limits, which is a lovely sentiment in fairy tales but totally untrue in real life. We all operate within limits, whether they’re the law of gravity or simple genetics – someone like me with red hair, pale skin & freckles is never going to achieve a suntan!

That doesn’t mean giving up on ambition & dreams, or never setting goals, of course not. We all need things to strive for, to challenge ourselves, to work towards. What it does mean is that we can live our best lives by focusing on the possible, the achievable, and taking steps at our own pace to get there.

To point out the chief quality or qualities of an individual or group

Applying this to living with a chronic illness implies that we are characterised by our condition, that it becomes an intrinsic part of our being. Again, this undoubtedly applies to my life. I am no longer able to separate out my illness & disability from who I essentially am, and I don’t see that as a bad thing.

This doesn’t mean it is all that I am or can be, just that #chroniclife is entwined with my sense of self, my lifestyle & my place in the world and I’m very ok with that. I think this is completely natural human behaviour – if I flip back in time to when I was working my whole identity was entwined with my career in the training sector, which is why it was initially so very hard to accept having to effectively retire. I wasn’t sure who I was without being defined by what I did.

It doesn’t help that as a society we value people by what they do, not who they are, and we love putting people in boxes & applying labels. Would I let anyone else characterise me or define my limits? Not a chance. But as a chronically ill person with disabilities I’ve definitely earned the right to set my own.

And I choose to identify with my illness, my disability, and do so proudly. It’s taken me a lot of work & some fab therapy to get to this point in my life, and I’m happy to own it.

But you know what? If you don’t feel this way that’s fine too, surely one of the most important things we do is choose how to define ourselves 💙