Dr. Ingela Thuné-Boyle
Uncertainty in chronic illness: Are you comfortable yet?
I had intended on posting a blog about what many people refer to as 'medical gaslighting' but considering the times we live in at the moment (dealing with the Corona virus), and the incredible effort by health care professionals to keep us safe, it seemed in bad taste to post something that is critical of some doctors. That doesn't mean it's not important - it is - but now is not the time. Now is the time to express gratitude for those putting themselves at risk by helping us. Now is the time to do everything we can to reduce their work load by practicing social distancing. What this time is also teaching us is that life can be very unpredictable. This virus has most certainly left many millions of people in a state of future uncertainty; so many have lost their jobs and maybe even a family member or a friend. However, this level of uncertainty is not new to people living with a long-term illness. Indeed, living with uncertainty is practically daily life for most of us who are chronically ill. So, let's talk about that instead and leave medical gaslighting for next time.
While healthy individuals are currently experiencing a huge amount of uncertainty and even hardship as a result of the Corona virus, their lives will eventually get back to some kind of normal - maybe even a new normal - but with far less uncertainty. Most will eventually re-establish their routines and feel some sense of control over their lives. However, for those of us with a chronic illness, that sense of future uncertainty was always there and continues to cause havoc whether we have a pandemic or not. Indeed, many people with chronic illness experience a level of uncertainty that impacts almost all aspects of their lives and daily activities. For example, people may experience uncertainty when the cause of the illness or illness progression is unknown, when symptoms fluctuate and are unpredictable, and when there is a lack of knowledge about treatment options and outcomes. Many experience a trial and error process of medications in the hope that one would work and fix symptoms. Even when symptoms have been controlled, the fear of treatment no longer working, or that the illness may worsen, remains.
Some people are more comfortable with uncertainty than others but most of us find it, at best, a nuisance, and at worst, something that can really impact our quality of life. Sometimes it's actually pretty terrifying. Are you going to remain employed? Be able to pay your bills or mortgage? Keep your home? Maintain relationships? Look after your children? Put food on your table? Will you ever be able to manage your pain adequately? Remain independent? Enjoy the things you used to enjoy? Will you remain stable or deteriorate? Can you actually improve and enjoy life the way you used to? Plan a holiday? See a friend? Should you even bother to date? The list goes on. Some illnesses have greater uncertainty than others but whatever illness you live with, there is always some degree of uncertainty. The Corona virus has also added an extra amount of uncertainty; many of you have a compromised immune system making you even more vulnerable during these unprecedented times. Indeed, all this can cause significant psychological stress in people living with a chronic illness.
Uncertainty is what we call a 'violation of expectancy' meaning when our expectations of how things should turn out are violated, we may lose a sense of control over our lives. Our nervous system looks for predictability and comfort so when we experience uncertainty, our brain thinks the situation is potentially threatening or dangerous. Day-to-day living requires endless decisions which require some degree of certainty for humans to continue to move forward. Most people are creatures of habit; when things go as planned, we feel in control but during periods of uncertainty, it can leave us feeling anxious and stressed. Indeed, illness uncertainty is associated with much worse outcomes in patients with chronic health conditions.
Uncertainty can be perceived as so threatening and stressful causing some individuals to rely on coping strategies that are not very helpful. It can lead to an inability to maintain relationships, limited social engagement, seclusion and a significant disruption to family life. Higher pain levels in the presence of illness uncertainty also predict greater coping difficulty and it can lead to frustrations with health care professionals. Research has shown that high levels of uncertainty is associated with less hope, more illness intrusiveness, greater emotional distress and mood disturbance, specifically more anxiety, tension, fear, panic, frustrations, anger, depression and a damaged sense of well-being. It's therefore extremely important to manage uncertainty in a way that maintains an acceptable quality of life.
Not enough research has been conducted on how best to cope with uncertainty; however, there are some areas you can focus on to build up your resilience. Being resilient means having the ability to recover quickly from difficulties and to adapt in the face of challenging circumstances while maintaining a stable mental well-being. With some regular and consistent efforts, you can actually learn to become more resilient that allows you to cope better. With resilience, we are better able to regulate our emotions. Resilient people have fewer depressive symptoms, they cope better with stress, are more likely to use problem-solving coping strategies and are better able to manage symptoms caused by traumatic events. There's even evidence that resilience may boosts the immune system! Being resilient helps us face our challenges head on and protects us from becoming overwhelmed by our experiences. It doesn't mean that we experience less distress but that we can handle difficulties in ways that foster strength and growth. Here are a just few areas you can focus on.
Mindfulness approaches focuses on concepts such as acceptance, letting go of control and living in the moment and appear to be a promising avenue for improving coping and reducing the negative effects of uncertainty. The first step of dealing with uncertainty is to accept that we cannot control everything. It means we surrender to what is and let go of control. Through mindfulness, you allow yourself to feel a wide range of emotions that you observe but don't react to. Practicing mindfulness helps reduce the intensity and longevity of the symptoms. However, it has to be practiced systematically like any new skill.
Some people are better at dealing with uncertainties than others, so don’t beat yourself up if your tolerance for unpredictability is lower than other people you know. Be kind to yourself! Remind yourself that it might take time for the stressful situation to resolve, and be patient with yourself in the meantime. I previously wrote a blog about self-compassion and ways to practice it so I won't expand on that in this blog but you can learn more about it here. Also, make sure you engage in self-care by eating well, getting enough sleep and exercise. Many people find stress release in practices such as yoga.
Generate a sense of self-efficacy, i.e. the belief and confidence that you have the power to deal with whatever comes your way and the ability to create change in your life. Remember that you have faced uncertainty before, many times no doubt, and you got through it. Chances are you’ve overcome stressful events in the past and you survived. Reflect on past successes. Give yourself credit. Think about what you did during an event that was helpful and not so helpful and what you might do differently this time. Build positive beliefs in your abilities to help you increase your self-esteem and confidence.
A sense of uncertainty in chronic illness can also seriously affect how hopeful you feel about your situation and your future. I mentioned in a previous blog that I personally cope well with uncertainty but uncertainty without hope is not a doable situation in my book. However, there are ways to generate a hopeful attitude if that's an issue you struggle with. I have written about hope in detail in a previous blog. If you're interested in reading about it further, please click here. Also, make sure you find a sense of meaning and purpose in your life. That will help boost you on difficult days and increase a hopeful attitude.
Research on social factors associated with uncertainty have found a beneficial role of social support. I would definitely encourage you to seek and activate as much support as you can. Many people isolate themselves when they’re stressed or worried but support is extremely helpful and important during difficult times. Seek support from those you trust. Having someone there by your side can make a huge difference even if all they do is listen. You can also reach out to support groups related to your particular illness. These days, you can find many of them online.
Ask for professional help
If you’re having trouble managing stress and coping with uncertainty on your own, ask for help. Find a psychologist or therapist that can help you process your emotions and guide you in developing healthy ways to cope with stress. They can teach you how to improve your problem-solving skills and generate a more hopeful attitude. They can guide you through various mindfulness practices and how to reach acceptance by letting go of control. How to become more tolerant of uncomfortable or scary emotions and how to trust your ability in coping with an uncertain situation. Most importantly, they provide you with lots of support and acknowledgement. That's the first step towards healing right there!
So, there are lots of ways to get a little bit more comfortable with uncertainty. That doesn't mean it's easy - let's not sugar coat it. Indeed, I'm not sure we can ever be fully comfortable with the uncertainty associated with a chronic illness. If you are, you're probably a highly evolved human being but I have yet to meet such a person. For most of us, anxiety, stress and frustrations around uncertainty are completely normal and can be managed and tolerated. With some time and regular practice, you can get to a level that's more comfortable and easier to live with. It's about developing what we refer to as 'affect tolerance skills'. That simply means learning to become more comfortable with uncomfortable emotions. Basically, learning to live with the emotional consequences of life's challenges in a more efficient way.
I'd like to end by acknowledging those who do not live with a chronic illness but are nevertheless experiencing an unprecedented level of uncertainty in their lives at the moment due to the Corona virus; the millions of people who have lost their jobs and have no money for rent or mortgage payments, who do not know where their next meal is coming from and don't know what's happening with their future. On behalf of those of us with a chronic illness, we see you, we understand, we know what it's like and we wouldn't wish it on anyone. Hopefully, it'll all be over soon. Stay safe out there people!
How do you cope with the uncertainties in your life? Please leave a comment below. If there’s something important you’d like to add that I didn't mention, please do so. I'd love to hear from you.
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in improving the quality of life of people living with a long-term illness. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.