Guest Blog by Dave Clark
(Counsellor, Writer and fellow invisible illness warrior)
In the previous blog post, I discussed how grief and loss are a normal part of an ongoing health journey. Understanding what it looks like and acknowledging it is a big step for some.
So, given that grief is part of our experience, what can help us carry these layers of grief in a gentler way?
Coping with the layers of grief
It took many years of illness and my own counselling to find gentler ways of coping with the layers of grief that come with chronic illness and disability. While these aren’t the only things that help, I find doing one of these is a good starting point when I am feeling overwhelmed by the sadness and unfairness of chronic illness:
The first thing that helps is gentleness. Illness and grief take a big toll on us and the last thing we need is to heap extra criticism and pressure onto ourselves. Being gentle and nurturing to our body, living within the energy levels we have that day and giving permission to ourselves to feel whatever emotion comes up – these things gently allow a slower pace to life, and they honour the layers of loss that each of us experiences.
There is the approach of stepping in, then stepping out of grief. We know from grief research that the people who cope best don’t avoid grief or stay in it all the time. They find a middle ground – when grief is there, they step into it and allow themselves to feel it in an amount they can handle, which might just be for a few minutes. And then, they step out of it, by doing something else or distracting themselves. When we grieve in small, regular amounts, we cope better.
Part of stepping into grief is finding ways to express it. This can be through talking, writing, telling stories, asking questions or having a big old rant! Some people use art, memes, songs and metaphors to describe what’s happening for them and what they’ve lost. I write poetry to share how I’m feeling, as creativity gives us a chance to express, to understand our world clearer and to find ways of sharing it with others so it becomes less invisible.
Finding a mix of pain and joy helps us in grief. We can hold the painful parts of illness somewhat lighter when we also feel some joy and laughter. Watching funny clips, listening to good music or audio book, tasting something yum, rubbing in nice hand lotion, sitting in the sun, wearing clothes we feel good in – these things help grief feel a bit gentler.
Rituals and memorials are shown to be helpful in making sense of the significant changes that chronic illness brings. This can be something small, like making yourself a cup of tea or watering the garden, or praying or looking at photos, or holding a special object like a rock or feather – anything that honours what life has been and what it is now.
One time I wrote a letter from my past self to my present self, to express compassion for what I have lost. Other times I light a candle or listen to a song that fits with what I am feeling that day.
There’s too much pressure put on us to find silver linings in chronic illness and grief – sometimes it just sucks and it’s okay for it to be that. So rather than put a positive spin on it, I find it more useful to look for meaning in my experience. Life can both suck and have meaningfulness in it, something that lines up with my values, beliefs and interests. Even if I can only do something meaningful for a few minutes, I am grateful for it, because it means even the worst of days carries something worthwhile.
Connecting with good people, our support crew – grief and illness are two of the biggest things that can isolate us from others. So, when we can, find a way to reach out to those good people, those ones that really get what we’re going through. It might just be a text or a meme or sharing a link to a video or having a one-minute phone call or asking them to bring you over your favourite food – these things remind us that while we are in pain, we are not alone.
And speaking of not feeling alone – I have written some articles and poems about my experience of living with a chronic illness and disability. I find this a way to express what it is like and to help my experience become less invisible to others.
Be gentle in your grief. And always reach out for support when you need it – your grief does not need to stay invisible. There are many people who care about what you are experiencing.
Dave
Follow @DaveClarkWriter and support his mission to spread awareness for the millions missing due to invisible illness.
Check out other works by Dave Clark below:
- How Dave Clark regained a meaningful life after developing chronic fatigue syndrome
an article and a video of a poem about how identity and worth are impacted by chronic illness - You’re doing a lot more than usual – a poem about some of the microaggressions we experience
- Bad Advice – A poem of mine on page 62
