Coming to terms with a long-term condition

By Caroline Butterwick,
updated on Oct 25, 2020

Coming to terms with a long-term condition

Living with a long-term condition can be hard, especially in a world that often feels inaccessible. From someone who has been there themselves, follow these tips to help process your emotions

I was born with a visual impairment, but coming to terms with its effect on my life wasn’t straight-forward. Then, as a teenager, I began to experience mental health issues. I was uncertain and worried, and at times felt like I was the only person going through these things even though, according to the disability charity Scope, there are 14.1 million disabled people in the UK.

Whether you’re struggling with the shock of a new diagnosis, or are trying to make sense of an illness you’ve always lived with, here are some tips for coming to terms with a long-term condition.

1. Acknowledge your emotional response

It’s completely normal to feel a mix of emotions about your situation, especially if you’re going through something new and unknown. Counsellor Claire Goodwin-Fee explains why we may feel this way.

“Illness and disability are things that are often not of our choosing, and so there will be a sense of loss, fear, or grief for our ‘normal’ world, and perhaps also for what we thought our lives would look like,” Claire says. “Taking time to process this and to be aware of how we are feeling is just as important as our own physical response.”

2. Connect with others

Meeting other disabled people has helped me feel less alone with my experiences. There’s often a sense of solidarity through sharing stories – from frustration at the inaccessible coffee shop in town, to talking about how we’ve managed issues such as disclosing disability at work.

Counsellor Claire recommends connecting with others as a way of normalising and understanding our feelings. Whether it’s a support group with people who may share your health condition, or something more informal, these connections can help us to explore our feelings in a supportive environment.

3. Decide how you want to talk about your situation

It’s your choice how you talk about your disability or health condition, and you shouldn’t feel forced to share your story with everyone if you’re not comfortable doing so.

If you do decide to have conversations about your condition, Claire recommends that you let others know what you would like from them, but also what you don’t want, or find unhelpful. You can do this in person, or put your thoughts in an email, text, or letter. Claire suggests trying to use ‘I’ statements in this conversation, so as not to alienate anyone, and to own your feelings. For example, you could say, “I feel uncomfortable when X happens, and instead, I would prefer Y.” You are communicating your thoughts and feelings, and setting boundaries in a way that will feel positive and constructive for both you and your loved ones.

It’s completely normal to feel a mix of emotions about your situation, especially if you’re going through something new and unknown

4. Understand your rights as a disabled person

In the UK, you are classed as disabled under the Equality Act 2010 “if you have a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities”. This means you have a level of legal protection.

Of course, as many disabled people know, unfortunately, this doesn’t stop all discrimination or make everything accessible to everyone. But knowing your rights, such as for reasonable adjustments at work or in education, can help you make your case. It has taken me some time to get used to asking for support, but now it comes naturally and makes things much easier. Find out more by heading to citizensadvice.org.uk

5. Use creative activities to make sense of your experience

As a writer, I’m naturally drawn to activities like journaling, poetry, and freewriting about my experience. Creative approaches can help us make sense of our situation, and see the journeys we’ve been on or the challenges we’ve faced.

Claire suggests the following creative exercise: go online and find a list of emotional descriptive words, then write these on pieces of paper, stones, bottle tops, shells – whatever you’re drawn to – and place them in a bowl. Pick one at random, and ask yourself if or how this word relates to what’s happening for you now.

Sometimes, just finding the right words, whether in a personal poem or when talking to a friend, can help us make sense of our experiences, and come to terms with what we are going through.

Claire Goodwin-Fee is a counsellor, trainer and supervisor. Find out more about Claire at counselling-directory.org.uk

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