ACT (pronounced as the word “act”) was developed in the late 1980s by American psychologists Steve Hayes, Kelly Wilson and Kirk Strosal. They saw it as an evolution of the well-established school of Cognitive Behaviour Therapy. Since its development, research involving controlled randomized trials has supported the effectiveness of ACT in managing a range of conditions including depression, anxiety and chronic pain.
When you have a chronic illness, the aim of ACT is to create a life that is rich and meaningful around pain, illness and negative emotional states and thoughts - rather than a life free of pain/ illness/anxiety/depression/stress etc. Trying to be free of these symptoms is simply an unhelpful pursuit as, by definition, a chronic condition is one you need to learn to live with. Paradoxically, despite what many believe, acceptance actually leads to symptom reduction as we remove the overlay of the disabling distress that comes from the ‘I want this illness gone’ mindset.
The principle of “acceptance” is the most valuable concept for you to embrace on your journey with chronic Ill health. The Buddhist teacher, Shinzen Young, developed this formula to explain suffering. He said Suffering = Resistance x Pain. This is where the notion of acceptance comes in, as acceptance is the opposite of resistance. So, the more you resist and struggle with your illness, the greater the suffering you experience.
In ACT, acceptance does not mean you like your illness or have no negative thoughts or feelings about it. It means:
- you stop struggling to get rid of it or control it (which is not a battle you can win with a chronic condition)
- you stop judging it or criticising yourself for having it (which only compounds your negative feelings)
- you stop analysing why you have a flare up now (when there are often no answers)
Instead, you acknowledge and make room for feelings like physical pain, or sadness about limitations, so that you can be the person you want to be around these feelings. You do not let your pain and illness hold you back from life-enhancing and meaningful actions. And you don’t let them stop you from being the person you aspire to be.
ACT makes a distinction between “clean distress” and “dirty distress” when dealing with the emotional and physical pain associated with chronic illness. The essence of “clean distress” is that you are just experiencing the pure distress in the present moment (“I’m sad, this is unpleasant”; “I am in pain”) without muddying the waters by adding in further negative thoughts like:
- judgements (“I should be able to cope better”; “I shouldn’t feel upset”), or
- assumptions (“This is my fault”; “Other people cope better than I do”)
- or predictions (“I’ll never be able to cope with this”).
“Dirty distress” also refers to additional feelings about your feelings (e.g. irritated about being sad - “I shouldn’t feel sad – I should just get on with it”). Thus, feeling irritated about your sadness over how you can no longer do that favoured activity or eat that favoured food is “dirty” distress. Judging yourself for being sad would also be “dirty” distress, while the sadness itself is “clean” distress.
So how do you do this? Studies have shown that writing about or talking out loud (even if it is to yourself) about upsetting situations reduces emotional distress. On the other hand, just thinking about it increases negative feelings. Keeping a journal will assist you with expressing your emotions, particularly if you want an alternative to talking to loved ones about it. (When pain and illness is chronic, friends and family do have their limits on how much they want to hear about it).
In ACT we also help people clarify their values so they can take actions towards creating the life they want. One ACT exercise to assist with this is to picture your funeral and imagine what people from different areas of your life (friends, family, work) will remember about you and how you lived your life. If what you imagine is not what you would like, this may guide you in making some changes now while you still have time.
Some other questions to ask yourself which may also help with values clarification are:
- What do I want my life to be about?
- If my health was to get significantly worse in 12 months time, what would I regret not having done?
- What is most important to me?
- Are my choices and actions in line with what I value?
- How do I want to be with friends/family/community/myself despite the challenges of this chronic health condition?
- In this moment, if I were being the person I want to be, how would I act right now?
- If my health wasn’t such a problem for me, then I would _____________________.
Coping with some health conditions may also mean coming to terms with the fact that they are chronic, waxing and waning ailments. Flare-ups happen, and finding a reason for a flare-up can drive you crazy. Often there is no pattern or obvious trigger to explain a flare-up. Therefore, no way of predicting it, and accordingly, no way of controlling it. This can be very frustrating.
Rather than trying to look back over what you did or did not do to cause this flare-up, or planning for every way you might avoid it in the future, it is better to acknowledge that you are having a flare-up because you have a condition that flares up. It is what it is.
So how do you want to be in the face of this flare-up? Kind and gentle with yourself in the present. Allowing yourself some space to feel the sadness, anger, frustrations etc, before engaging with how you want to be in this next part of your day. Making choices in areas that you do have control over. Choices that will be in the direction of managing this flare up and your health as best you can. This may involve:
- meditating and/or medicating to assist with discomfort
- pacing what you do if your are in pain
- reminding yourself that flare-ups pass
- shifting your attention away from “why?” to other things (sounds, people, and activities) in your present environment
- you may even choose to set aside some time to acknowledge (and even write about) your feelings now or later
In a nutshell
To summarise, ACT is all about accepting what you can’t control, and committing to doing what you can in spite of the pain, fatigue, limitations and other challenges that come with chronic health conditions. You do this in order to create a life you value.