Scanxiety combines both English words, scan, ‘a medical test that produces a picture of the inside of your body’ and anxiety, ‘the state of feeling nervous or worried that something bad is going to happen’.
Scanxiety by definition is the anxiety surrounding test results or scans. This is a common feeling for any person who undergoes these tests and then waits for results. Those in the Neurofibromatosis (NF) community are hard hit by these feelings.
As someone who has NF, scanxiety is something that I know very well. Living with a lifelong, unpredictable condition, is fear-inducing. It can be nerve-wracking waiting for your next MRI to happen. At various times, I’ve had them at three and six-monthly intervals. During those times, it feels like you are in a constant cycle of scanxiety, as by the time you have one lot of results it’s time for the next one. It feels like an endless loop of exhausting emotions.
I’ve often gone into the MRI machine knowing the scan prior had revealed a growth in my brain tumour’s size. At these times, lying still with only your thoughts as a distraction for an hour can feel like torture. Other times I go into these routine scans metaphorically blindfolded. My eyes smothered with the uncertainty of what these results may show.
A fear of the unknown, mixed with the waiting game - that is what plays on my mind. When these emotions hit, I get covered in what feels like ice-cold butterflies while trying to mentally prepare for the unpredictable. This leaves me in a place of scanxiety until I step into the doctor's office for the results.
It is completely normal to feel this way, I am sure anyone who has faced these tests knows what I’m talking about.
Both patients and families may experience scanxiety in the time between routine scans and receiving the results. It's an inevitable experience along the NF journey. These worries may be planted by the seed of the unknown, for now, and for the future.
The hardest part is waiting for the results and every time your body and mind remembers the trauma of last time, I can recall every bit of bad news I have received.” Mum of a child with NF1
Acknowledging these feelings is the first step to accepting them. I’ve found these are some of the things that help me when I feel the scanxiety coming:
- Give yourself permission to feel scared or angry.
- Check-in with yourself and reach out for help if needed.
- Call the CTF support team on 02 9713 6111 (select option one).
- Distract yourself, find something that you enjoy and take the time out to do it.
- Be careful of what content you are taking in on social media. Sometimes doctor google is your worst enemy.
- Exercise.
- Meditate - you can use an app like Smiling Mind, to get started, others include Stop, Breathe & Think, Headspace, Calm, and Simply Being.
- Connect with others online or at live events. Talking about your feelings/problems out loud can be helpful and speaking to people who understand what NF is and what you’re going through can make you feel less alone.
I have found that the NF community unites when it comes to our fear and anxiousness around the unknown. Know that there is always support, and all of your emotions are valid. There are always people who are willing to listen.
Assistance is only one call away.
Contact the CTF support team by phone from Monday to Friday, 9:30 am to 3:30 pm AEST on 0297136111 (select option one) or by contact via email at support@ctf.org.au
Written by Jasmine Le Tisser in collaboration with the Children's Tumour Foundation