What I've Learned in ACT for ME.
Disclaimer:
I am not a trained therapist or psychologist these are just things I have learned in my time with Acceptance Commitment Therapy (ACT) for MECFS that I want to pass on as I know it can often take time to find a therapist who suits you well. Please seek out professional help if you are newly diagnosed with a chronic illness from someone trained in ACT. You do not need to go through this alone.
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Letting go of unattainable goals.
-Ask yourself what you want out of life. Identify goals that are unattainable (this will largely be any highly physical activities or activities that require large amounts of physical attendance, but for severe patients may be basically all previous activities) and learn to picture a life without them.
-Focus on letting go of the most unattainable goals first
-Work on separating character traits (ie. I am a creative person) from specific goals or activities (ie. I am a choral performer)
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Finding new ways to express character traits
-Take the character traits from activities you had to give up and search for new ways to express them.
-For people with severe illness this may require expression simply in the form of thoughts. (Ie. I use my creativity to keep my mind entertained when resting.)
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Finding simple pleasures
-Bathing is often a good source of simple pleasure for those well enough to do so
-Mindful eating where you eat slowly and focus on the flavor and texture of eating bite may also be helpful to those with few activities left in life
-Finding textures (ie. A blanket or plush toy) or gentle music you enjoy
-Adding beauty to your space. Most severe patients will be staying in one room often dark for long periods. Finding something like a galaxy projector or some fake plants can make a huge difference to your mental health.
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Letting go of blame
Try to notice the feeling of guilt and question them rationally here are some things you should not rationally feel guilty for but are commonly stigmatized in our society
-Resting
-Quitting activities
-Accepting help from others
-Using mobility aids
-Receiving government assistance
-Receiving help from family/friends
-Taking medication
-Not being "productive"
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Focus on producing your own happiness
Remember that improving your quality of life is a productive task that requires a lot of effort with chronic illness. Symptom management, finding simple pleasures, meditation, and rest are all productive actions towards this goal and you should feel proud for accomplishing them.
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So simply due to the nature of myalgic encephalomyelitis as an illness a lot of content on this page can be pretty depressing. Even good news like the recent success of publishing NICE still confirms the reality that there are no treatments that can cure MECFS.
However, it is important to remember that just because we cannot cure our illness does not mean there are not important things we can do to manage it. My recent post on pacing highlights this as does my past post on why I recommend ACT or "Acceptance and Commitment Therapy" as a way to deal with the stress of living with this terrible disease.
Unfortunately, mental health services can be difficult and expensive to access so I thought I would put together a follow-up post with specific mental health tips that have helped me in therapy. While everyone is different, I think these basic principles of letting go of unattainable goals, finding new ways to express your identity, letting go of guilt, and focusing on creating your own happiness are a great place to start for anyone facing a sudden change in disability and quality of life.
I am not a mental health professional and I still highly recommend that anyone who is struggling with depression from chronic illness should seek out a professional in this space. I highly recommend ACT as a modality as that has been most effective for me and I think it is well suited to chronic illness but these same goals could be accomplished through CBT, DBT, or unstructured talk therapy so long as the person you are working with understands chronic illness well.
Hopefully, this list of tips and things to work on also shines some light on just how therapy for ME can be helpful more than a general "it will help you cope".
If you have your own takeaways from therapy for ME-related mental health issues please leave them in the comments below so we can learn from each other!
