Navigating Scanxiety with Mental Health Counselor in Training Valerie Johnson
Written by Melissa Schenkman, MPH, MSJ
Living with a chronic condition often means regular medical tests and scans - a process that can trigger significant anxiety. YMyHealth spoke with Valerie Johnson about the often-overlooked phenomenon of "scanxiety" and how to manage it, especially for young adults living with chronic conditions. Johnson is a pre-licensed counselor, who is currently interning under supervision at the Atlanta Wellness Collective. While she completes her Master's in Clinical Mental Health Counseling this May, she has had in-depth experience working with and performing research in the autoimmune disease community and its impact on people’s mental health.
Can you share your experience working with clients with chronic conditions?
Valerie Johnson: I am currently a pre-licensed counselor in the state of Georgia, meaning I am still in school. I graduate in May, but one of my passions has been working with individuals who are navigating life with chronic illness, which includes but is not limited to autoimmune diseases, genetic disorders, POTS, PCOS, infertility, and so much more under that umbrella.
The work is very different for each person, but often involves grief and identity work. Nervous system regulation is also something I'm really passionate about, along with trauma recovery. I've completed a Master's thesis studying adverse childhood experiences, dissociation, and dyslexia as predictors of health-related quality of life in individuals with autoimmune diseases, which has informed my work with clients.
How would you say living with a chronic condition and mental health intersect?
There's a lot of research suggesting a high correlation between the two. Of course, correlation doesn't imply causation, so it's like asking which comes first. Honestly, I think it can be both. Recent research shows there can be a link – especially when talking about epigenetics and chronic conditions – where otherwise dormant conditions don't express themselves until there's some level of emotional stress. Research suggests trauma can play a part in triggering these dormant conditions.
When you're dealing with the onset of a condition, it can be really isolating. It can create social isolation, loss or confusion of identity, and financial stress too. On average, it takes somewhere between four to nine years, sometimes even longer, to be accurately diagnosed with a chronic condition. When you're in that period of unknown and invalidation, it can absolutely bring on anxiety and depression.
For people in their 20s, 30s, and 40s, how is living with a chronic condition unique compared to older age groups?
There are many ways this experience differs for younger people. Almost certainly, young people experiencing symptoms and seeking diagnosis have heard phrases like, "You're too young to be having these symptoms" or "There's no way you could have this condition."
For example, around 2018, the average age to be diagnosed with lupus was in the early 50s. I looked it up recently, and that number has gone down. There's growing recognition that this generation is being diagnosed more frequently at younger ages. But the misconception that young people can't experience chronic conditions makes them feel less heard, less understood, and less believed.
Another aspect is that when someone begins having symptoms in their 20s or 30s, your life is just getting started. You're looking at this whole life that needs to be grieved because you're accepting that your adult life will look completely different than you thought it would. That's a significant difference compared to experiencing these symptoms in middle or older adulthood.
How would you define the concept of scanxiety and how did you first learn about it?
Scanxiety is quite literally what it sounds like – anxiety experienced before, during, or after a medical exam, such as an MRI, CT scan, or other major medical tests. I feel like I've known about scanxiety for a very long time through my own personal experience. I might not have known the name initially, but being in this community for a long time, I picked it up somewhere.
How common would you say scan anxiety is?
I would venture to say it's very common. Even people without a history of ongoing medical conditions can find medical tests very anxiety-provoking and nerve-wracking. There are many different facets to it – the waiting period for results, the implications of results, and even the scan itself can be anxiety-provoking, especially with things like MRI machines, which are tight spaces and very loud.
Why do you think scanxiety often goes unrecognized or is rarely talked about?
With my personal lens and experience, I didn't completely recognize that it wasn't talked about because in the communities I'm in, I hear about it all the time. But there are barriers that prevent people from expressing their concerns and anxiety.
In the medical industry, there's not always much discussion about mental health – it tends to be more of an afterthought. Additionally, many people with chronic conditions fear being dismissed. They don't want to appear overly anxious about scan results or be labeled as hypochondriacs. This fear of not being believed leads to downplaying their experience, which is a very real problem.
Is it normal to be anxious before medical scans, even if you don't have symptoms?
Yes, it's very common to experience anxiety before a medical scan, even if it's routine or there's no history of chronic conditions. What's unique for someone with a chronic health condition is that while there's anxiety about potentially finding something serious, there's also this complicated aspect of "what if they don't find anything?"
As we discussed, it often takes years for an accurate diagnosis, and many conditions can be difficult to detect. Being validated in their experience can provide relief. There's hope that maybe this scan will provide answers or set them on a path to treatment, while simultaneously navigating the fear of what those answers might be.
Is having scanxiety potentially an indication of underlying health anxiety or stress?
Not necessarily. It's very common to feel nervous before a medical scan, even for otherwise healthy people. It can be a normal stress response, especially for someone with medical history or who has experienced medical trauma where testing becomes a trigger for the trauma response.
I wouldn't say it necessarily indicates a diagnosable anxiety disorder, though it absolutely could if the severity causes significant distress and impacts everyday quality of life. But in and of itself, not necessarily.
Does scanxiety tend to increase as people get older?
That's a great question. I think it's a unique experience for each person. As we age, we're expected to have more medical scans – once you hit 45-50, you're looking at more routine mammograms, colonoscopies, etc. So as more people are being scanned, rates of scan anxiety would likely increase.
For people with chronic illness who have been getting frequent scans, there may be trauma associated with scans for various reasons, which would increase anxiety levels. But there are also factors that can decrease scan anxiety, such as developing healthy coping mechanisms and working through these experiences in counseling.
What can people with family history of serious conditions or chronic conditions do to cope with regular scans?
As a counselor, I can't recommend counseling enough as a long-term coping strategy. This gives you space to dive into these complex fears in a healthy way with someone who's attuned to your experience. If you're seeking counseling specifically for chronic illness or scan anxiety, try to find a counselor who specializes in working with individuals with chronic illness.
Counseling groups and support groups are also great resources. These provide a sense of community and universality to your experience. Since living with chronic illness can be so isolating, finding support groups or counseling groups can help reduce that isolation.
How can someone stay calm during waiting periods for test results?
This can be really challenging. Beyond seeking counseling, reach out to your social supports – make dinner plans with friends or movie nights. This provides distraction, increases connection with others, and boosts overall mood.
Plan and participate in activities that bring you joy during this time. Engage in things that help you feel calm, like reading, movement (if cleared by your doctor), crafting, or other activities that serve as healthy coping skills. These are all great to engage in during waiting periods to help you stay in a place of safety in your body.
What's a short checklist for approaching medical scans and appointments more confidently?
Consider bringing a support person with you to help you stay regulated and feel a sense of safety.
Try journaling leading up to the appointment to get those anxious thoughts out of your head and onto paper.
Talk with your social supports about your fears in a safe way, if you have people you can be vulnerable with.
Ask your doctors any questions you have – knowing what to expect beforehand can be really helpful when anticipating an important appointment.
Want to hear directly from Valerie or our other YMyHealth contributors? Check out the podcast!