Wednesday wisdom-identity and chronic illness.

Today’s Wednesday wisdom is about identity. When you become chronically ill one of the things that can become really confusing is working out your identity. All the things that you may have defined yourself with such as relationships, work, hobbies and even wardrobes are changed. You can’t do most, if any of the things you used to do in the way you used to do them. It can also make your reactions and feelings so much more complex and different to who you were previously. So if you’re not the person who you thought you were then who are you?

So what do you do?

I used to be a teacher and when I tell you how much I loved that job, I really mean it. I’d had jobs before but this was my first proper full time, official title, role defining job. And I was good at it, sometimes really good. I loved being a teacher, seeing my students each day, loved hearing Miss shouted down the corridor, on the bus, down the street! It was part of my very being. So when I was no longer able to work as a teacher, no longer able to work at all in fact. I unravelled. If I wasn’t teaching, wasn’t working, who was I? I’d had a job since I was 14. I really didn’t know who I was without one.

Now this might sound extreme but think what’s the first thing people ask you after they meet you? Your name, then it’s so what do you do? And when the answer isn’t a clear I work at x,y,z people don’t really know what to do with that. I certainly didn’t. It took me quite some time to feel comfortable with saying I’m not well enough to work and then moving on. Those who need to know, know.

One of the few things you have when you become too chronically ill to work is time. Time spent on your own with nothing else able to be done but think. And this time really allows you to confront the good and bad about yourself. What you want out of life (even if now it looks different), things you wish to change and alter about yourself or need to reflect on.

It can also allow you the time and space to think of how you can adapt those dreams and aspirations and break them down to things you can do.

It is highly unlikely I will ever work in a classroom again. I’ve made my peace with this over the years choosing to focus on the good I did and not the sadness of what can no longer be done. I have skills and knowledge that can be applied to other roles. And most importantly I have the confidence that I am capable of more than I ever imagined.

I have seen so many ill/disabled people pivot their careers, forge out their futures and pave the way for us. It is a constant reassurance to me that the work place is continually evolving. Jobs exist now that didn’t before, workplaces can be (when they choose to be) accessible and flexible. There are places for us.

Hobbies

After work one of the biggest things (bar relationships) that define us is what we do for fun. Pre illness I loved dancing, singing, reading, listening to music, going to the theatre and the cinema.

Due to a mixture of fatigue and hypersensitivity (to noise/light/crowds) I was no longer able to do these things as I once had. And it’s not really until you can’t do something that you realise how much it means to you, how it fills you with joy.

So firstly my beloved fellow chronically ill people, let me say how much you have my full and wholehearted empathy for this. Grieve the things you miss, feel all the feelings it is important. It absolutely is not fair that you no longer can easily do these things you enjoyed. From that can come a place that we can work with. I wrote about acceptance here. And once we have acceptance then we can look at adaptation. I am fiercely protective of people’s rights to joy, particularly the ill and disabled. So much of our effort goes in to existing, to just being here we absolutely deserve and need good things.

Here are some of mine, how I’ve adapted and often pace them.

Dancing- watching others dance brings me great joy so I’ll watch a couple of clips on reels or YouTube and marvel at the athleticism and skill. I’ll play a favourite song I used to dance to or a new one that I’d love to, close my eyes and imagine myself moving to the music.

Theatre- online theatre has been an absolute game changer for me, through YouTube, marquee TV, national theatre online and the BBC and sky arts showcasing shows, plays and ballets. It’s been a wonderful way to access the art, you can play at your own pace and add subtitles/descriptions where needed. Plus many of these are free or offer free trials. And later on this year I might even venture to a cinema and watch one of the plays there!

Singing- I’ve downloaded a new app to help with this and just practice a few notes everyday and one or two lines of song if I’m feeling up to it. It feels like something I can build up to and I really enjoy it.

Reading- audiobooks when I can’t sit up and read, listening books is a wonderful charity or you can use borrowbox or other apps for your library audio and ebooks.

When you have so little energy to spare you have to be incredibly selective upon what you do with it. Bar the essentials when there is some left over it can feel like an act of rebellion, a defiance. Here’s you choosing joy, choosing lovely and frivolous and beautiful. What is it that you love? What makes your heart sing and how can you in a new and accessible way may it work for you? I’d love to hear of your choices.

So who are you?

I both am and am not who I always was. I am the meeting of my old self from within the depths of illness, those parts I’ve reclaimed, fished out, fought for and rediscovered and my current chronically ill self. I have found depths within myself I did not know I contained. I have examined my impatience, intolerance, anger and negativity. It’s made me stare at what lay beneath. Picked apart the pieces of me I had hidden from. This illness has laid me bare, made me spend more time with myself than I would ever wished for. And whilst I’ve seen the very worst of me it’s made me appreciate and acknowledge the very best.

I am my funny, bright, witty, intelligent, kind, generous, fiercely loyal, curious, stubborn, silly, goofy, no nonsense ever evolving self. I will feel and deal with my anger and impatience and negative feelings. I no longer hide from them, they are a part of me that will not be ignored but dealt with. I have techniques and tricks and channels to use.

I might not know what the future holds or exactly who I am but I’m enjoying figuring it out.

You can read more of my essays on acceptance and seeking joy in creativity.