It takes psychological flexibility to thrive with chronic illness | Aeon Essays
…approximately a third of adults suffer from multiple chronic conditions, wreaking untold havoc on healthcare systems and economies across the globe. …as a clinical psychologist, I see many people trying to navigate the daily vagaries of chronic afflictions.
The underlying factor for all of them, however, is that, in the absence of a cure, people want to live the best life they possibly can, regardless of their affliction or disability.
In my practice, I approach these issues from a therapeutic perspective known as acceptance and commitment therapy, or ACT (said as the word, not the acronym). I encourage anyone dealing with similar issues to learn about this approach, as it has been helpful to my clients and countless others.
Generally, living as rich and meaningful a life as possible when you are struggling with a chronic illness requires a great deal of psychological flexibility.
The only thing you can count on is the fact that you never really know what your day is going to look like, and that things are always changing.
Psychological flexibility is the idea that we need to be present with what is happening right now, free of judgment, and to respond in a way that moves us forward rather than getting stuck in the emotions or feelings of the moment – anger, frustration, sadness, pain and so forth.
Below are some approaches that you can use to help you increase your psychological flexibility and, I hope, help you live a more meaningful life, even if you have a chronic illness.
Be the thinker, not the thought:
This phrase refers to how we handle our internal voice, the constantly running commentary that we experience all day, every day, and can never seem to silence. For whatever reason, that inner voice can be very critical, judgmental or even downright cruel.
We also tend to listen to it way too much. Since human beings are rather egocentric, if our mind is telling us something, we tend to automatically believe it to be true
Be the thinker, not the thought simply means increasing your awareness of the thoughts you are having, being more observant of your own thought processes, putting some distance between the thought and reality, and then making some better decisions about whether or not to engage with them.
But how does one do this?
In this context, truth matters much less than function, so if the thought is of little use in moving you forward, no matter how true or false, it is probably best to shift your focus away.
This is an interesting concept and a bit counterintuitive. Thoughts guide our actions, and it seems “wrong” to let anything less than the truth (at least the best approximation we can reach) direct us.
However, some thoughts function as impediments to our happiness. Thinking about the cold sore that has swollen your lip with its ugly scabs will make you feel like you don’t want to be seen and lead to avoiding social activities. Thoughts about the cold sore are NOT useful, because they serve no purpose and only make you feel ugly.
But those thoughts get in the way of relating to other people, even though other people probably only have a brief thought about themselves, “I’m glad I don’t have a cold sore right now”, and after that they ignore it.
We’ve all had times when we were in public and unaware of a problem with our appearance, like having a tangled burr in the back of our hair or leaving our jeans fly open. Until we’re aware of it, it doesn’t affect our interactions with others, but once realized (and dwelled upon) it inhibits our behavior.
So, notice the thought, decide it’s not useful, let it go, and move forward.
Be open to acceptance:
This is perhaps the most difficult and misunderstood concept of ACT. For many, especially those dealing with a chronic illness, when they hear the term ‘acceptance’, they get upset.
They liken it to being told to suck it up, to just deal with it or to stop complaining. In many contexts, this might indeed be the message that’s being sent with this word, but this is not the case from the ACT perspective.
When we have so often been told that our pain is all in our heads, we’ve become sensitized to this reaction. Unfortunately, since we expect to be denigrated, we interpret everything said to us afterward expecting to be discredited.
The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent.
Recognizing when you have little to no control over something can help you to stop struggling against it.
This is much harder to do than to say. Exactly because our pain is chronic, we can’t just give up trying to “fix it” because it’s not about “letting it go” for the day or week, but often, for the rest of our lives.
That’s what makes chronic pain so devastatingly powerful over our minds and not just our bodies.
Validating – not minimising or negating – your experience can help you to honestly assess your condition, your options and your choices.
Allowing yourself to feel what you’re feeling can help you to move through it, and turn your actions and attention to more meaningful pursuits.
This is absolutely not true for me.
When I allow myself to focus on them, I get swept up in my feelings of impotent rage, agonized frustration, or helpless grief, and these feelings only grow and become even more powerful. I remember hearing that whatever you focus on will grow the most, and I’ve found that to be very true.
These feelings are worse than useless since they prevent me from attempting any remediation and push me to the brink of giving up on my life entirely.
Instead, I have to starve these feelings of the attention that gives them their power and deliberately change my focus to something else.
Dropping the moment-to-moment struggle, and accepting where you are and what you can do in this moment can be powerfully transformative. It frees up energy and time to engage with family, friends, hobbies, leisure activities, rest and so forth.
You probably hear a lot about being mindful, meditating, staying focused on the now, not getting stuck in the past or caught up in the future. This is all good and wise, but what does it actually mean?
What if your present is painful and difficult, why would you want to stay there? Staying present is another tricky concept.
From an ACT perspective, it means paying close attention only to what’s happening in this very moment, in your body, in your mind and all around you.
I don’t see how this is useful when I’m in pain. Bringing focus to the pain that’s “happening in this very moment” is excruciating.
This is a hard thing to do: it does not come naturally because our minds don’t easily allow it. We’re always looking for the next thing that might hurt us, regretting or reliving the past, worrying about the future.
Regrets about the past and worries about the future do nothing for your current situation. You need to deal with what’s right in front of you,
They assume that our past is filled only with regrets and the future only with worry, but that’s an assumption that doesn’t fit me.
My past was filled with adventures and accomplishments and I often remind myself of that as solace for having eventually lost it. I don’t think much about the future at all because I’ve learned that everything changes so quickly that we can’t even imagine a realistic scenario extrapolated from our present situations.
In my case, remembering my past or imagining the future is far less painful and destructive than “remaining in the present” when it’s filled with incurable pain.
I get the feeling that none of the people making all these suggestions of how we could better manage our thinking have no idea at all about what it’s like to live with chronic pain, pain that’s always a threat and will only worsen over time.
Be here now, not there then
It doesn’t mean you’ll be this way forever…
Oh yes, I will! My pain from EDS is guaranteed to worsen.
…it just means this is where you are right now, so make decisions about your life based on that, not where you were or where you wish to be
Know what matters: there are few things that will clarify your priorities and values like a chronic illness. It turns your life upside down. The things you thought mattered – such as meeting work deadlines, getting promoted, making a good impression at the neighbourhood party – all of a sudden matter a whole lot less. Use this clarity to guide your decisions and your behaviour
It’s important not to confuse values with goals.
Goals are achievable and have an end point, whereas values are consistent guideposts in your decision-making process that are never truly attainable.
It might be a goal for you to be able to attend an important family event, but being engaged with your family is the value behind the goal.
When you determine your values, this is where you want to pour your energy. Then you can use this information to guide all your decisions.
Always evaluate your thinking in terms of how useful it is in moving towards your values.
Recognise, however, that your values will likely go hand in hand with your pain. Often, when pursuing values, we need to accept that pain will come with it.
This is the difference between pain and suffering. Pain in the pursuit of valued actions is purposeful. Pain without purpose is suffering.
Chronic illness might have robbed you of much of your abilities. You might feel like a shell of your former self.
This is very true, but I like to think of myself filling that old shell with new passions and activities.
With chronic illness, you can easily spend all day cataloguing what you can no longer do, but to what end? Does this move you towards your values?
Our lives are ultimately determined by our behaviours – by what we do – and any action, no matter how small it might be, that moves you towards your values is better than doing nothing or shutting yourself down
Chronic illnesses are insidious. They can take over your life and the lives of everyone around you. They are seductive, trapping us in a vision of what we don’t have and what we don’t want.
I’m sure I’m not the only one who feels a little guilty for bringing our pain into our relationships, even as we have little choice. (see Stressed out? Your dog may feel it too) With a close intimate relationship, there’s no hiding the truth.
While it’s a relief to be completely honest with my spouse, family, and friends, I’m also embarrassed to be such a “problem” and to burden them with all the limitations I have.
You have every right to be angry, frustrated and resentful.
It always feels good to be given permission to be weak, to let myself sink down into expressing all my misery.
But from experience, I know I will only feel worse for it.
No one should tell you otherwise. You feel how you feel, but you don’t have to let those feelings – or your attempts to control them – dictate how you live
You might not have a choice about your illness, but you do have choices about how to live with it.
This is a difficult reality for me.
What I really (but secretly) want (even though I know it’s not possible) is for some doctor to find me a “cure” (impossible with my genetic disorder).
At any given moment, those choices are either moving you towards your values – the things that matter – or they are not. Choose the former – it will lead to a more meaningful life.
You are right, Zyp! A lot of the recommended “psychological” interventions are a crock. They can be re-traumatizing. Of course no research was ever done on the people who had bad reactions to any of it. There is a dangerous amount of denial and ridiculousness applied to people with pain.
I have a theory that this denial is cultivated by a corporate conspiracy, one that protects the industries. Injured workers, sick people, and the damage caused b our dysfunctional healthcare system, can all be explained away or denied.
If people knew that office works and time at a computer would do this to them, they might rethink their employment. The same with big box stores, mining, and a lot of other professions. They created an alternate fact narrative for all of it. People are actually working themselves to death, as the work week gets longer.
This corporation even came out with an advertising campaign about how great they are to work for. The long term health costs of this kind of employment, are never calculated. Well they have been, but that is all proprietary. These companies figured out years ago, that all they had to to was pay some “researchers” to find ways to blame the employees for their ill health. Psychologists were more than willing to provide ineffective “treatments” that only serve as a distraction. The healthcare industry in league with the corporations, is not allowed to even acknowledge the damage from the jobs. Physicians work in tandem with these industries, just like they did with the “Cold War” workers and the coal mining companies. When workers who were exposed to dangerous materials in defense labs, reported symptoms, they were accused of alcoholism or other random, vices. Today coal miners with silicosis, are not covered under the “Black Lung” rules, instead physicians that noticed the silica in the lungs of miners were silenced.
We live in a nation of alternate facts, where the current false narrative about pain and other issues, is cultivated and repeated until people believe it. The media misreports facts, distorts science and runs misleading adversity porn about sick people. The regulatory agencies no longer regulate, they protect the corporations. The healthcare industry found these lies and counter narratives profitable. Pain is good for marketing, they can sell products, devices and “treatments” that don’t work. Those “mindfulness based treatments” do not relieve the kind of pain that many people with chronic pain experience, but they have been heavily marketed and they sound trendy, and inexpensive. For people who don’t have healthcare access, they can replace medical care, after all if they present this as a cure, we don’t even need to see a doctor.
If we look around and ask, how did we get here, a society where healthcare is rationed and people lose their jobs and homes when they get sick, al we have to do is look at the media false narratives about it all. They apply the same level of denial to everything, hungry abused children, traumatized veterans, and corporate corruption.
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Unfortunately you are right: public perception and beliefs are shaped by repetition of whatever “story” is popular, true or not, and the assumed truth is rarely questioned. The media has turned into a propaganda monster and I see no way to stop it.
This was just one side effect of the Internet, that media companies have to make money by “clicks” and “eyeballs” viewing pages. Once they had to start chasing click bait to stay alive, the quality of journalism and its ethics have plummeted. But when the truth goes against the popular “story”, reporting it won’t get enough “clicks” to pay the reporters.
We live in a transactional society now, with motivations shaped only by money as other values aren’t profitable. When your income is on the line, how a reporter tell the truth when people just don’t want to hear it?
I highly value ideas about surviving severe disabling chronic pain (pain that has destroyed lives and taken away almost every form of joy or meaning), from people who have ACTUALLY experienced years of agony – with no doctor who understands why you are suffering, no treatments and no cures – only doctors who are sarcastic and tell you to lose weight and see a therapist. going over 15 years now – living in the moment IS living in terror and pain, grief, loss, and hopelessness. 15 years of things only getting worse. And having professionals minimize everything we are surviving (I wouldn’t even call it that), is beyond insulting. It is part of the abuse itself. More loss occurs with each day. We are being hunted judged and condemned by laws past last year. The entire society is sick with denial, minimization, shaming/blaming the chronic pain patient. Lying to us. Using crazy-making forms of minimization. I can’t even have any form of intimate conversation with my wife due to pain, meditation is an insane suggestion. As is “embracing the pain”. It is my feeling that everyone in the helping field is so busy trying to get rid of their own psychological discomfort with the amount of agony people are suffering, that most of them choose to take the easy way out – and – one way or another – blame us if we are unable to function without opiate medications. IF these suggestions were made from a place of authenticity, they could only be applied AFTER the trauma level pain has been stabilized.
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I agree – much of this is just putting even more blame and burden on pain patients.