Living with disabling conditions like ME/CFS and long COVID, with energy limitations that restrict what you can do, can be very challenging. There are many losses associated with living with these chronic conditions, as they affect all aspects of your life. From the realisation that your health isn’t improving, to the shock of receiving a diagnosis, to changes in your career, relationships and sense of identity.
Strong feelings are common with every change or loss, no matter how big or small. While learning to pace can help improve your symptoms and stabilise your condition physically, it can be difficult to live within your energy envelope.
Looking after your emotional wellbeing
A chronic illness is something that will be with you over the long term, and it is important to support your emotional wellbeing along the way. This can be made more difficult if your usual coping mechanisms, such as going for a walk, are no longer available to you because of the illness. You may need to develop new coping and self-care strategies that are within your energy limits.
Some tips for supporting your emotional wellbeing:
Be kind to yourself
Major illness is one of life’s top stressors. Living with a chronic illness is difficult. Be gentle with yourself. Allow yourself time to adjust and grieve each time something changes. And remember that, while chronic illness can be very isolating, you are not alone.
Focus on what is within your control
Many aspects of an incurable chronic illness are outside your control, and that can feel overwhelming. Find the things that are within your control and try to focus on those. Perhaps you can’t catch up with friends, but maybe you could email them. If you can’t garden, you may still be able to have a pot plant in your room.
Learn to say “no”
Living a paced life, one that is within your energy envelope and helps you minimise post-exertional malaise, means being able to say “no” to people, and even to yourself. This can be difficult to learn, but also empowering.
Manage your stress
Living with a chronic illness is stressful enough, but it doesn’t stop other challenges from coming up too. Managing stress helps you to cope with things happening in your life and can help minimise the effect of stress on your body and health.
Everyone is different, and you need to find what works for you. Some people find meditation or mindfulness helpful. For others, listening to gentle music or sounds of nature works better. is more helpful. Others may need something more active, like listening to a podcast or doing colouring.
Fill your bucket
Stress is draining, like a bucket with a hole in the bottom. Sometimes, like when living with a chronic illness, there is not much you can do to plug the hole. It’s important to have things in your life which replenish you and allow you to refill your bucket. You may need to find new things if the things you used to do are now beyond your capacity.
Connect with others
Living with ME/CFS and long COVID can be isolating. You may find it beneficial to reach out to friends and family who you know are supportive and/or develop connections with others living with the same illness through online ME/CFS and long COVID communities.
Places like Emerge Australia’s online community forum, and social media groups can help you build connections and a sense of community.
Resources
Stress management apps and tools
- https://au.reachout.com/mental-health-issues/anxiety/how-to-manage-your-anxiety-and-stress
- https://toolkit.lifeline.org.au/topics/stress/tools-apps-for-stress#
- https://www.thealliance.org.au/2020/04/27/eight-digital-tools-to-manage-stress/
Friendline
A phone and online chat service if you’re feeling lonely.
