There is a lot of anxiety that comes with being chronically ill. If I’m not careful, I can get overwhelmed with the stress and uncertainty over my health and future.
Over the past year, I have been in acceptance and commitment therapy (ACT), which is a mindfulness-based practice. It helps to create psychological flexibility, meaning that you learn to stop struggling with your illness (or other difficult circumstances) while moving towards living your life in a way that is valuable to you.
The main point is that struggling with your illness creates additional suffering on top of the symptoms of the disease itself and the limitations it places on your life.
If you fixate on a problem you have little to no control over, you lose energy that could otherwise be spent doing something you love. My (very limited) energy is sacred to me, so I try my best to apply these four lessons on a daily basis. This helps me keep my anxiety in check and find joy.
1. Stay in the present
A lot of my days over the past years have been, by ‘normal’ standards, empty. When there’s not much to do, or much you can do, it’s almost automatic to spend a lot of time daydreaming, ruminating over the past, and worrying about the future.
For me, this can turn into worrying about a doctor’s appointment days in advance, or replaying a conversation over and over in my head. That makes it difficult to enjoy what you’re doing and it drains my energy.
It took a lot of practice, but now I am generally able to let go of these worries. When I have an appointment where my illness is the focus of discussion, this becomes more difficult. This often triggers thoughts, emotions and fears about what my future looks like. But on most days, I can focus my attention on the present, enjoy what I am able to do, and live day by day.
2. Let go of things I cannot control
I’m a born problem-solver and analyzer (read: overthinker). This is often useful, but not when you have a chronic illness and you cannot control it.
Illness certainly feels like a problem, but trying to solve it doesn’t help.
After spending years perfecting my daily routine, sleeping environment, and more, I got to a point where there was little more I could do to influence my illness. It took me a while to get my head around accepting it instead, and using my energy to look at what I can control.
It leads to a lot less frustration and disappointment, which is great. My goal for this year is to live more freely, with my illness less at the forefront of my daily life. Last year, I used to journal every day and track a whole bunch of symptoms. I have stopped doing that and it has already brought me a breath of fresh air!
3. Look at thoughts differently
I tend to get caught up in my thoughts easily. My mind is great at sucking me in and showing me a whole movie of how something might play out.
The problem is that fatigue already makes it more difficult to feel connected to the space I’m in and people around me. The more I am sucked into thoughts and worries, the more detached I feel.
Be an observer
ACT has helped me look at my thoughts differently. To play an observing role, letting them come and go, acknowledging them and then redirecting my attention to something else. I love the metaphor of thoughts being leaves that you watch float by on a stream.
This is also the basis of the Mindfulness Collection: nature and leaves providing a refuge from the inner world of the mind into the present moment. Both figuratively, in thinking of thoughts as leaves floating by, as well as literally: walks through the forest calm and ground me.
Putting this symbolism into a collection of earrings helped me express gratitude towards what mindfulness has taught me. Not having to take my thoughts seriously and being able to distance myself from them, without suppressing them in a way that they only come back stronger, is a skill I am grateful to have learned.
The Mindfulness Collection
This collection is full of reminders of nature to help stay grounded and present. Catch a glimpse in the mirror and take a deep breath. Use it as a reminder to appreciate the present moment.
4. Focus on living a meaningful life within my limitations
When I had to stop working, I thought that meant letting go of being able to make a meaningful contribution to the world. It took me a while to get out of that mindset and learn that having to let go of my career did not automatically mean I had to let go of my passions.
Find a feeling of fulfilment
One of my doctors once said to me that the most important thing I could do for my health and well-being was to try to get to a point where I go to bed at night with a feeling of fulfilment. Honestly, it’s the best advice I’ve received and I live and swear by it.
“The most important thing I can do for my well-being is go to bed at night with a feeling of fulfilment.”
What do I value?
Finding fulfilment encompasses figuring out what I value and what my needs are, as well as where my boundaries are when acting on those. Some days, fulfilment comes from giving my body the rest it needs. Other days, I have a bit more energy to do something for a loved one, try something new or tackle a creative project.
I have learned that I can work towards my values even when I am not able to do the work I used to, or meet goals as ambitious as mine used to be.
I value making a meaningful contribution to the world. And I can still do that. It might be on a smaller scale or in a very different way than I used to imagine, but honestly, it feels just as meaningful – or maybe even more so. It can be a message from a stranger who finds solace in something I have written or the joy on a loved one’s face when I make them something.
Motivation and drive
Most importantly, feeling my own motivation and drive to work towards new goals is, in itself, something I value highly. I remember the days when I was so sick that nothing seemed possible anymore. To be in a much kinder and calmer headspace is freeing. And I owe that to my own perseverance and commitment to practicing mindfulness and acceptance.
Overall, these practices help me remove my illness from the forefront of my daily experience insofar as that is possible. While the experience of my illness is always there, I have freed myself from a lot of the fixation, worrying, and stress that used to cloud a lot of my time and energy.
Obviously, I’m not always successful at keeping these four lessons in mind and living by them. I’m human, after all! But I have noticed that the more I practice, the quicker I notice when I’m about to enter an anxiety storm and the easier I can pull myself back out.
Also, please note that I worked on this with a psychologist specialized in ACT. While mindfulness and acceptance techniques are easily accessible and in their basis can be practiced individually (‘The Happiness Trap’ by Russ Harris is a great place to start), if you are struggling with a huge weight of anxiety, please seek help from a professional!
About the author
Hi there! I’m Susan. I created Claymeleon to tell stories about my life with a chronic illness through handmade polymer clay earrings. What started as a hobby to pass the time on sick leave has turned into a small business that hopes to inspire vulnerability through creativity. When I’m not creating, I can generally be found resting on the sofa or doing puzzles with a bucket-sized cup of herbal tea.
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