Scanxiety: 5 Tips for Coping When You’re Waiting for a Diagnosis
Scanxiety, dismissive doctors, and mysterious symptoms — can these experiences offer more than anguish? Luckily, there is a silver lining to the ordeal of a delayed medical diagnosis, experts say.
For years, Valerie Murray would suddenly find herself out of breath — after climbing the stairs, making the bed, or just after finishing a sentence. Sometimes she’d hear a crackle in her throat when she took a breath.
Murray, now 52 years old and a mother of four children in Tracy, California, brought the symptoms up with her doctors. Over the course of a decade, she was diagnosed with asthma, vocal cord ulcers, and acid reflux.
But she knew there was still more going on.
So, in January 2022 she booked another appointment with her family doctor about her concerns.
“I told my doctor, ‘I feel like I can’t breathe here’ and I put my hands on my throat. I felt like it was something more than what I’d been told,” she said.
That appointment led to biopsies, blood tests, and CT scans, as well as more appointments with her family doctor and specialists.
“It’s nerve-racking to have to wait for a diagnosis and not know what’s going on with your body. You know there’s something wrong,” Murray says.
After months of anxiously waiting for test result after test result — and an answer — Murray received a definitive diagnosis for the first time in years.
In June 2022, she was diagnosed with idiopathic subglottic stenosis, a rare disease that causes a narrowing of a specific portion of the windpipe known as the subglottis, which is just below the vocal cords. Idiopathic means that the underlying cause of the narrowing is unknown.
“It was a hard time, waiting for answers, and trying not to think of the worst case scenarios,” Murray says.
Her breathing problems have mostly disappeared since she underwent dilation surgery in June 2022 to remove scar tissue and open up her airways. But she continues to be vigilant about a recurrence of symptoms.
Murray’s journey is a common one. Whether it's during the wait for follow-up tests, results, or a firm diagnosis and treatment plan, “scanxiety” is a term widely used to describe the genuine feelings of anxiety, trepidation, worry, and concern people encounter when they don't know the cause of their medical symptoms.
“It’s certainly difficult to cope with bad news, whether about yourself or a loved one — but waiting is often even harder because we’re in a state of paralysis,” says Kate Sweeny, PhD, a professor of psychology at the University of California in Riverside, whose research focuses on worry and waiting.
“Once you have a diagnosis, you can start taking action. But during the wait, you can’t do anything that might feel productive — and you can’t move forward with your life until you get the news,” she says.
Research has described the term “scanxiety” as the anxiety, restlessness, and nervousness patients feel in the days or weeks before a scan or test, during the scan, and in the days and weeks before the results are in.
The prevalence of scanxiety may be as high as 83 percent in cancer patients awaiting any type of cancer-related test results, one study found. That review analyzed data from 15 studies; the researchers identified overall trends in what was behind the scanxiety. Patients indicated they feared their treatment wasn't working, that their cancer was spreading, or a disease was returning.
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There is a silver lining to scanxiety, though. During all the years of stressful waiting, Murray had been doing something crucial: boosting her coping skills in the face of uncertainty.
Scientists call it resilience, or “the ability to flexibly adapt to challenges that come your way,” says Beth K. Rush, PhD, a neuropsychologist at the Mayo Clinic in Jacksonville, Florida.
And nowhere is that resilience needed more than during the long and stressful wait for a diagnosis — and what follows — especially with hard-to-identify conditions such as MS, rheumatoid arthritis (RA), and endometriosis.
While some people are more naturally anxious than others — and some will experience more scanxiety because of their personality and their specific circumstances — resilience is a skill everyone can develop when it comes to facing an unknown medical diagnosis or other adversity, says Rosalind Dorlen, PsyD, a clinical psychologist who practices privately and at Overlook Medical Center in Summit, New Jersey.
Think of it as a muscle that needs to be exercised, rather than an inherent trait.
“It’s normal to feel anxious when you’re dealing with a health issue,” she says, and just recognizing that these feelings are okay is the first step toward developing a resilient response, Dr. Dorlen says.
Better resilience has been shown in a variety of studies to help people in physically trying circumstances feel better about their lives.
A study of more than 1,500 people with physical disabilities, published in June 2017 in the journal Archives of Physical Medicine and Rehabilitation, found those with more resilience reported a better quality of life than others in the same situations.
People with RA who scored higher on a resilience scale were less likely to be depressed than lower scorers, according to a small Canadian study presented in November 2015 at the American College of Rheumatology annual meeting.
Another small study, published online in July 2019 in the journal Arthritis Care & Research, looked at the resilience development process and strategies used to cultivate resilience in people with rheumatoid arthritis. Researchers concluded that people acquired resilience from learning to respond to new disease challenges, and identified 10 strength-building strategies, including social support, flexibility, and equanimity.
And when more than 800 patients with fibromyalgia at the Mayo Clinic were asked about their resilience and their symptom burden, greater resilience led to fewer bothersome woes, according to research published in the journal Stress Health.
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General stress-reduction techniques also help build good coping skills, including exercise, adequate sleep, and healthy foods, Dorlen says. Additionally, try these five strategies for changing your mindset and calming your scanxiety.
One mind tweak Dorlen recommends: Seek out the voice within you that is supportive. Just as a parent tells a child, “You can do it” or “You are capable” — say that to yourself as often as possible, no matter what’s going on, she says.
Keeping things in perspective is another important way to boost your resilience, Dorlen advises. “Try not to catastrophize,” she says, especially since medical breakthroughs continually enable people to live long and productive lives.
Resiliency in this case requires you to dig deep and consciously challenge your negative thoughts, replacing them with more balanced ones, Dorlen says.
For Murray, this meant steering away from googling her symptoms to discover what she might have. She intentionally reminded herself that the worst-case scenario is probably unlikely and that advancements in medicine meant there would be treatment available to help her.
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In addition to shifting your thoughts, actions can help shore up your coping skills, according to the American Psychological Association (APA). These include seeking out helpful information and taking charge of your health situation.
Dr. Sweeny, who has spent the past decade or so building a “toolbox” of coping strategies for people living with scanxiety, says to gain control where you can to help yourself manage feelings of helplessness.
“Waiting is one of those experiences that really takes the control out of your hands,” she says. Instead of waiting in vain, think of anything you can do to prepare, whether it’s for a test or procedure or for any potential results.
“If you have a breast biopsy coming up and you’re worried about the result, focus on making sure you understand your insurance coverage, reviewing the leave policies at your work, or considering how your kids will get to school if you need treatment,” Sweeny says.
This step gives you autonomy in an uncertain situation, so you feel armed with a plan however things go.
Sweeny’s second piece of advice is to get into a flow state, which is a “state of complete focus on an activity, such that your thoughts are quiet and time passes without you noticing.”
Use what she calls the 15-minute test: What is an activity or task that requires your full attention and often makes you lose track of time? Turn to your passions, whether it’s baking, going to the movies, taking up a spin class, or reading a book with a cup of coffee.
Keep your mind occupied, steering your thoughts away from worry and waiting.
If it works for you, try mindfulness meditation, Sweeny says. It also helps you stay present in the moment rather than fixating on the uncertainty of the future.
Avoid getting on the computer when you don’t have a diagnosis and seeking out the worst disease you might have or the bleakest prospects you might face. This is not helpful for building resilience, Dr. Rush says. This can perpetuate a negative pattern of thinking that actually exacerbates stress and reduces resilience, she says.
Resilience does not mean stiffening your spine and toughing out your situation alone. Reaching out to others who understand what you’re going through is critical to adapting to your situation. “That process of connection is known to strengthen resilience,” Dorlen notes.
There’s much research to back up the benefits of group therapy and peer support, including a 2020 study that looked at group therapy in patients with breast cancer and its effects on the women’s mental health.
Murray says she had several groups to turn to for this type of support while she battled her mystery symptoms: her family, her best friend, and her Christian faith community. She also sought out a Facebook community group built around subglottic stenosis patients just like her once she had a diagnosis.
“Friendship definitely helped me — having someone you can talk to, who can give you wisdom and perspective when our fears overtake us,” Murray says. She says she turned to the people in her life who have compassion and did not perpetuate negative thinking or fear mongering. She also sought out prayer during trying times.
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