How Do I Cope With HHT Scan Anxiety?

Living with Hereditary Hemorrhagic Telangiectasia (HHT) means undergoing lifelong medical surveillance, which takes a significant emotional toll ^[1][2]. The intense fear and distress leading up to, during, and especially after medical imaging is a documented medical phenomenon known as scanxiety ^[3]. You can manage this anxiety by actively minimizing the time spent waiting for results, preparing for the physical realities of scan day, practicing mindfulness techniques, engaging in cognitive behavioral therapy, and leaning on a strong support system.

Understanding Scanxiety

Scanxiety is a widespread and multi-faceted issue that affects many people managing a chronic illness ^[4]. For patients with HHT, the necessity of regular screening to monitor for visceral arteriovenous malformations (AVMs—abnormal tangles of blood vessels in internal organs like the lungs, liver, and brain) can feel like a constant, looming threat ^[3][5]. Research shows that this anxiety typically escalates across the different phases of imaging, but it most frequently peaks during the stressful waiting period between having the scan and receiving the results ^[6][4]. This chronic distress is negatively associated with emotional functioning and can significantly impact your overall health-related quality of life ^[7].

Actionable Coping Strategies

Managing scanxiety requires practical, psychological, and systemic approaches. Here are evidence-based strategies to help you cope:

• Shorten the Waiting Game: The most direct way to reduce the duration of scan-related distress is to minimize the interval between the scan itself and the communication of results ^[7]. Advocate for yourself by asking your care team exactly when and how you will receive your results (e.g., “Will I receive a phone call, or should I check my patient portal by Friday?”), or request to schedule the scan and the follow-up appointment on the same day.
• Prepare for Scan Day: For HHT patients, the physical scan itself carries unique anxieties—such as the fear of a severe nosebleed while lying flat in an MRI machine, or anxiety around IV placement when you are chronically anemic. Communicate these fears to your radiology technician beforehand. Establish a “panic button” plan so you can alert them if a bleed starts, and ask for accommodations like a warm blanket or listening to music to make the physical experience more tolerable.
• Practice Mindfulness: Strategies that encourage you to focus on the present moment, rather than fixating on or ruminating over potential future outcomes, are highly beneficial in reducing scan-related anxiety ^[8]. Techniques such as Mindfulness-Based Stress Reduction (MBSR) have been associated with improved psychological well-being and reduced stress ^[9]. You can even use these grounding techniques while holding your breath for lung CTs or lying still in an MRI.
• Consider Cognitive Behavioral Therapy (CBT): CBT has demonstrated the potential to modify anticipatory anxiety by helping you identify and reframe heightened feelings of threat associated with expected medical procedures and results ^[10].
• Build Your Support Network: Clinical literature emphasizes the importance of balanced family support and open communication with your healthcare providers to mitigate anxiety ^[11][12]. Bring a trusted friend or family member to your appointments. Additionally, connecting with patient advocacy organizations like Cure HHT can help you find community support among others who understand the unique burden of this condition.

Reframing the Purpose of Scans

While scans are inherently stressful, it can be helpful to reframe how you view them. Regular screening, imaging follow-ups, and the prompt treatment of AVMs and bleeding are critical components of a multidisciplinary approach to HHT ^[13]. Effective management through these proactive measures is proven to address complications early, significantly improving both quality of life and overall survival ^[5].

Keep in mind that finding an AVM does not always mean immediate surgery; doctors often employ a “watch and wait” approach to monitor stable AVMs safely over time. Your scans are not just tests to pass or fail; they are the tools that allow you and your medical team to actively protect your health.