Living with long-term illness can be difficult, especially in a world that often feels inaccessible. Follow these tips from someone who has been there themselves to process your emotions
I was born with a visual impairment, but dealing with the impact on my life has not been easy. Then as a teenager I got mental problems. I was insecure and concerned and at times felt like the only person going through these things, despite the fact that there are 14.1 million disabled people in the UK according to the Disability Charity Scope.
Whether you’re grappling with the shock of a new diagnosis or trying to understand a disease you’ve always lived with, here are some tips on how to deal with a long-term condition.
1. Acknowledge your emotional response
It’s completely normal to feel a mix of emotions about your situation, especially when you’re going through something new and unfamiliar. Counselor Claire Goodwin-Fee explains why we feel this way.
“Illness and disability are things that we often do not choose and so there will be a sense of loss, fear or sadness for our ‘normal’ world and maybe for what we thought our life would be like,” said Claire says. “It is just as important to take the time to process this and to know how we feel, like our own physical reaction.”
2. Connect with others
Meeting other disabled people has helped me feel less alone with my experiences. There is often a sense of solidarity from sharing stories – from frustration at the inaccessible cafe in town to talking about how we dealt with issues like disclosing disabilities at work.
Counselor Claire recommends connecting with others to normalize and understand our feelings. Whether it’s a support group with people who share your health status or something more informal, these connections can help us explore our feelings in a supportive setting.
3. Decide how you want to talk about your situation
Your choice is how to talk about your disability or health condition, and you shouldn’t feel compelled to share your story with everyone if you don’t want to.
If you choose to talk about your condition, Claire recommends that you share what you want from them, what you don’t want or what you don’t find helpful. You can do this in person or write your thoughts in an email, text or letter. Claire suggests trying to use first-person statements in this conversation so as not to alienate anyone and to possess your feelings. For example, you could say, “I feel uncomfortable when X happens and I would prefer Y instead.” You communicate your thoughts and feelings and set boundaries in a way that feels positive and constructive for both you and your loved ones.
It’s completely normal to feel a mix of emotions about your situation, especially when you’re going through something new and unfamiliar
4. Understand your rights as a disabled person
In the UK, under the Equality Act 2010, you are classified as disabled “if you have a physical or mental impairment that has a significant and long-term negative impact on your ability to carry out normal daily activities”. This means that you have some level of legal protection.
As many disabled people know, this of course does not stop all discrimination or make everything accessible to everyone. Knowing your rights, e.g. However, it can help you defend your case, e.g. for appropriate adjustments in work or training. It took me some time to get used to asking for support, but now it comes naturally and makes things a lot easier. More information is available at Citizensadvice.org.uk
5. Use creative activities to understand your experience
As a writer, I am naturally drawn to activities like journaling, poetry, and freewriting over my experiences. Creative approaches can help us understand our situation and see what journeys we have been on or what challenges we were facing.
Claire suggests the following creative exercise: Go online and find a list of emotionally descriptive words. Then write these down on paper, stones, bottle caps, shells – whatever you wear – 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 right now.
Sometimes just finding the right words, be it in a personal poem or talking to a friend, helps us understand our experiences and grapple with what we are going through.
Claire Goodwin-Fee is a consultant, trainer and supervisor. More information about Claire can be found at counseling-directory.org.uk