10 Ways to Embrace Uncertainty When You Experience Chronic Illness

Uncertainty is a part of chronic illness, but cultivating flexibility through mindfulness can help you cope. Here’s how to stay open even when things are unpredictable.

Feelings of uncertainty are common in the daily life of someone living with chronic illness. This may be from the unpredictability of your flares and symptoms, unexpected financial burdens, or even that your formal diagnosis is still unknown.

However, holding space for uncertainty — or allowing uncertainty to be there without trying to fix it — might be your key to not only surviving but thriving while living with chronic illness.

Holding space for uncertainty allows you to process your experiences and emotions and let go of what you can’t control.

Read on for a deeper explanation of what it means to hold space for uncertainty, plus simple steps to accept the uncertainty that comes with chronic illness.

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Uncertainty and your health

A sense of uncertainty in chronic illness may lead to feelings of emotional distress, anxiety, and depression, as noted by a 2017 meta-analysis of chronic illness in children.

Uncertainty can also influence the experience of disease by worsening perceptions of pain.

A 2018 study of 25 young adults diagnosed with congenital heart disease associated chronic uncertainty with post-traumatic stress symptoms (PTSS) and post-traumatic stress disorder (PTSD).

According to an older 2009 study, illness uncertainty is related to:

• heightened sensitivity to pain
• reduced tolerance of painful stimuli
• maladaptive coping
• higher psychological distress
• reduced quality of life

If that’s the case, why would you want to embrace it?

It turns out that being unable to tolerate uncertainty is negatively associated with psychological well-being in individuals living with long-term physical health conditions.

In other words, how you cope with uncertainty may have a direct effect on your mental health.

Eric Goodman is a professor at California Polytechnic State University, a psychotherapist specializing in anxiety and obsessive-compulsive disorder, and the author of The Mindful Freak-Out. He also lives with chronic kidney disease.

Goodman uses mindfulness, the practice of gently focusing your awareness on the present moment rather than the past or future, personally and professionally.

He explains the potential effects of uncertainty with a parable about an ancient warrior hit by two arrows in battle. The first arrow is just that — a wayward arrow that the warrior can’t control. However, the second arrow is his reaction to the first.

That arrow may contain self-judgment, anger, and resistance or self-compassion, understanding, and acceptance. Either way, the second arrow’s contents affect how the warrior copes with his injury.

An older 2002 study noted uncertainty “is a neutral cognitive state and should not be mistaken for its emotional outcomes.” Similarly, uncertainty must be seen as a threat to have harmful effects.

In other words, uncertainty alone isn’t the issue. It’s how you relate to it that’s key.

What it means to accept uncertainty

“Acceptance doesn’t mean that you don’t do what it takes to manage your symptoms the best way that you can,” says Goodman.

Instead, it’s simply acknowledging the reality of the situation, difficult feelings and all.

Michael Kimball is a certified mindfulness teacher, professor of anthropology at the University of Northern Colorado, and author of Ethnowise. He also experiences chronic back pain.

Kimball shares that he’s had to confront and reevaluate his ideas about himself as back pain increasingly limits what he can do.

“It really changed my perspective on what my activities should and can be,” he says. “I’ve had to do a reset in terms of what it is to be me. There’s kind of an identity transformation there.”

This is a common experience for those with chronic illness. However, uncertainty is a part of life — with or without a diagnosis.

“We have a kind of mythology that we cultivate, which is that everything’s supposed to be the same,” he says. “When it deviates from the same … then it’s very distressing.”

Instead of setting up a false expectation that things will stay the same, Kimball suggests embracing impermanence — and the uncertainty that goes with it.

“We are living in impermanence every day. Every minute,” he says. “We’re living it.”

Although uncertainty may be uncomfortable, it’s a necessary part of life. By learning to welcome and cope with the gray area of uncertainty, you can relax rather than fight against it.

“It’s really about welcoming in experience rather than being selective about it,” says Kimball. “Then there’s a kind of new strength that grows in you that’s independent of whatever mood you’re in at the moment or whatever physical state you’re in.”

How to embrace uncertainty

Here are a few simple ways to cultivate the ability to hold space for the uncertainty of living with a chronic illness.

1. Practice mindfulness

Mindfulness involves acknowledging the internal thoughts, feelings, and sensations you experience throughout your day without chasing the pleasant ones or pushing away the unpleasant ones.

“Without mindfulness, we’re mindless, which means that we’re at the whims of our primitive instincts to lead us to react to situations,” says Goodman.

Thoughts, feelings, and sensations are natural internal events that come and go. Acknowledging what you’re experiencing without labeling or judging can create space for a pause.

For example, “I’m noticing feelings of anxiety” or “I’m noticing nausea and a rapid heart rate” is a simple acknowledgment of what’s going on in the body, heart, and mind.

According to Goodman, this presents an opportunity to unhook from the stories the mind imposes on our experience.

“Chronic illness has been with me every day of my life,” Goodman says. “Even though there are certain biological limits, there doesn’t have to be those psychological constraints that aren’t necessarily helpful.”

2. Choose to allow

After acknowledging what’s coming up for you, you can decide to allow it rather than fight against it.

“Notice the fight. Let go and just feel the anxiety,” says Goodman. “But feeling the anxiety with a struggle is not the same thing as feeling it openly and willingly and mindfully.”

This often involves dropping judgments you have about what you’re feeling.

“We’re always passing judgment on our experience, 24/7,” says Kimball.

Instead of judging and assigning meanings like “good” or “bad,” he suggests simply allowing it to be there.

“When you’re doing a mindfulness meditation practice, you’re not trying to achieve bliss,” Kimball adds. “Instead, you’re just integrating with experience and noticing it as non-judgmentally as you can.”

You can decide to allow uncertainty and the discomfort that comes with it. That doesn’t mean the uncomfortable feelings will go away. It simply means it can all be allowed to be there.

3. Be flexible

Allowing can give way to a sense of flexibility in the face of uncertainty. Remember, our biggest moments of growth and most meaningful experiences often happen during times of uncertainty.

When you reframe uncertainty as an opportunity, uncertainty becomes a possibility.

“Chronic illness is something we’re forced to live with in ways that we never chose and would never choose. And so there’s a bunch of different emotions that come with that,” says Kimball. “They’re all invitations … to learn how to cultivate acceptance and let go of things that have changed.”

4. Look to nature

Spend time in nature to appreciate unpredictability and uncertainty. Make a note of how the end result of uncertainty in nature is most often beauty.

For example, mountains and lakes were not planned. They were actually created in times of great turmoil and pressure.

5. Stick to routines

Embracing uncertainty doesn’t mean throwing out your routines and rituals. Instead, they can help ground you when you’re feeling overwhelmed.

Examples of routines can be activities of daily living such as brushing your teeth, washing your face, or unloading the dishwasher. These rituals can be an opportunity to practice mindfulness.

6. Seek support

Seek support through talk therapy, coaching, or a support group. This can help provide you with tools to manage uncertainty and give you perspective through hearing others’ stories and experiences.

Goodman suggests exploring acceptance and commitment therapy (ACT), which focuses on accepting the reality of your experiences and committing to pursuing your values in the face of them.

“We can let the chronic illness become the sole focus, have our lives revolve around that, or we can understand how we want to be in this world while we’re chronically ill,” says Goodman.

He also suggests becoming your own best friend by cultivating an inner monologue of self-compassion.

“If you’re going through uncomfortable medical procedures, or pain, or other symptoms, having your best friend with you at all times, unconditionally supportive — that’s a wonderful thing,” Goodman says.

7. Breathe

Deep breathing is a common starting point for cultivating mindfulness and creating a space to allow difficult feelings.

Kimball suggests a basic mindfulness practice that involves bringing your attention gently to the breath as it moves in and out through the nostrils.

Kimball notes that breathing may not be the best practice for everyone.

“For some folks, either because of trauma or because of physical disability … breath is simply not the object you want to use,” he says. Instead, you can focus on any object that works for you.

This can include:

• a visual object, like a statue or candle flame
• a steady sound, like an air conditioner, radiator, or white noise
• a sensation, like feeling your hands on your lap or feet on the floor

8. Focus on what you can change

There are plenty of things outside of our control. Instead, focus on what you can control.

For example, you can control:

• how kind you are to yourself.
• how you treat and respond to others.
• how you care for yourself.
• how you show up each day.

Goodman suggests finding meaning in each moment despite chronic illness.

“If we were being our best selves, and we’re living with this chronic illness, what would that mean?” he asks. “How would we want to meet the challenging moments?”

For Goodman, the answer is with intention and compassion rather than reactivity.

“Other animals … have to go along with whatever their nervous systems are doing,” he says. “But if humans can get mindful, if they can get off autopilot and just be in the moment, unhooked from the stories that their mind’s telling them, then they can choose to respond to things that are based on who they want to be — their value system rather than just their threat instincts.”

9. Level set

Set realistic goals and expectations. Being able to celebrate successes can help manage uncertainty.

Examples include:

• Exercise for small, digestible periods instead of signing up for a half-marathon.
• Make nutritious food choices just for this meal. Then try it again at your next.
• Give yourself grace when flare-ups occur instead of expecting the same level of energy.
• Schedule in rest times for yourself. If you don’t need all of them, that’s great!

10. Be curious

Embrace curiosity about the future and yourself. By staying curious and relaxing any judgment about your future self, you’ll be better at managing uncertainty that arises in the future.

Curiosity can also make way for excitement and positive anticipation for what’s to come.

Takeaway

Holding space for uncertainty can be uncomfortable, but it’s a major part of chronic illness and life in general.

Small shifts like focusing on accepting and allowing what comes your way can help you respond to uncertainty with kindness, flexibility, and self-compassion.