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Illness is just one part of who you are

Jane Clarke

One of the hardest psychological elements of being unwell is that your illness comes to define you – as if your condition, whatever it may be, walks into a room before you do, taking up the air, becoming the focus of attention and conversation. It’s something I know from my own experience, as well as from talking with my patients. I was very poorly as a teenager and young adult, and often spent weeks in hospital, dosed up on morphine to help me cope with the pain of my condition. Yet towards the end of my illness, I often wouldn’t let the doctors call my parents to tell them I was back in hospital. I was fed up with being the sick one in my family; the one my parents' friends would always ask about; the one who missed large chunks of school and couldn’t do the things my friends did. I used to hate that conversations would be steered to my illness, even while understanding that friends and relatives wanted to show their love and offer their help.

When you are living with illness, especially when it’s serious, it’s as if the rest of who you are fades into insignificance. Yet this is exactly the time when you want to feel normal and to be treated just as you’ve always been; to have light conversations; to share in the concerns of those close to you, instead of them thinking their worries pale in comparison to what you’re going through. I also believe the Internet can make being unwell even harder to deal with. It’s an amazing tool which enables us to communicate and relay remedies and medications, but it’s also given licence to everyone to pitch in with advice about what you should do to get better. Well-meaning texts, emails, WhatsApp groups, phone calls – and all the other endless ways that people contact us – can also overwhelm, as they’re a constant reminder that you’re a patient, not a person.

Putting boundaries in place can really help to widen the focus so you feel and are viewed as a whole person, rather than being defined by your illness. I want to share some simple practices I’ve found helpful in my life and that I know have been used successfully by my patients. Do try a few and see if they help. And if you have other ideas that have worked for you, we'd love to know; the empathy and experience of those who have been in a similar situation is so valuable when you’re having a tough time living with an illness.

Timetable talk time
Choose one hour a day and let everyone know this is the time they can talk to you about your illness, ask questions and share any insight. The rest of the day they need to allow you to be a 'non-ill' person. It means you can pick up the phone without fear of yet another individual asking how you are and reminding you that you’re not well, unless it’s the allotted time. If you can’t face conversations about your illness, you may want to create a group chat using a tool such as Instant Messenger or WhatsApp to keep people updated. You could even ask one person you trust to be in charge of sharing any news and information for you.

Find a talking space
It helps if you have one place in your home where you have conversations about your illness or take phone calls from doctors. Memories become associated with places, so compartmentalising a room – or if you’re strong and well enough to go out, a bench in the garden or a local quiet space – will help prevent your illness taking over your home, so it still feels like a sanctuary for you. This is one reason why it’s not always the best option to have treatments at home. If you do, then dedicating one place (ideally, not your bedroom) may mean you can escape any negative associations once your treatment is finished.

Choose a treatment ‘uniform’
Have one outfit that you wear when you go for treatment or hospital appointments, which then gets taken off and put away when you don’t need it. It allows you to put your ‘unwell’ persona in a drawer, so you can be ‘the real you’ the rest of the time.

These can seem small or strange things to do, but small things can make a big difference to how you cope. Well, they did for me.

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  • Excellent ideas, especially about the treatment clothes. I can also really relate to the way you describe how easy it is to become ‘the spectre at the feast’ if you dont set boundaries!

    Jan on

  • Thank you Jane for sharing. Very useful suggestions to stop being overtaken by the illness. It’s about looking after the soul. My father has early onset alzheimers and my step-mother, who is doing the best she can, uses every opportunity to remind him that he has alzheimers. In her words she wants to keep things ‘real’ I will share your article with her.

    Angela Williams on

  • What a great post Jane, its so useful to think about not just how an illness shapes you, but the consequences of it whether intended or not. I’ve shared this page several times and will continue to do so. Do you ever write about your illness? I would love to know more. My own illness in childhood inspired a career, I was a nurse then a social worker and loved both jobs.

    lynne on

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