Helping My Child Cope with Medical Anxiety

My daughter Caroline was two years old when we noticed she was developing medical anxiety. Most children do not enjoy going to the doctor and many tend to get nervous during appointments, however, Caroline’s experience was very different. She had more than just nerves, she was experiencing true anxiety and was extremely fearful during doctor appointments.

The first and most notable sign of anxiety in Caroline were tremors. As we approached the doctor’s office or hospital entrance, her legs would start shaking uncontrollably. Caroline would also often close or cover her eyes to avoid eye contact with the doctors and nurses. She would cling tightly to me for hours during clinic, often sweating through her shirt onto mine. If anyone knocked on the door to enter, her entire body tensed up and she may start shaking.

Beyond typical anxiety

Caroline’s anxiety began to interfere with the quality of treatment she would receive during appointments. She would strongly resist physical contact from anyone other than myself or her dad; because of this her CF team could not get appropriate vitals on her or track progress accurately between appointments.

I quickly realized the anxiety Caroline was experiencing was beyond the typical fear kids felt at doctor’s visits. The tips and tricks I received from fellow parents just were not going to be enough for her. My husband and I became determined to help her cope, so we started researching ways to help ease her medical anxiety.

It has been over a year since we began addressing Caroline’s medical anxiety and now, at four years old, her ability to work through and manage her anxiety has improved dramatically. I know her progress is because of the measures we took (alongside her CF care team) to ensure she had the tools to cope. One year ago, it would have felt impossible to say this, but now Caroline even enjoys and helps with parts of clinics and doctor visits.

Here are a few ways we helped Caroline cope with her medical anxiety:

Let your CF care team know

We recently switched CF clinics and before our first appointment I reached out to her new team and told them Caroline has severe medical anxiety. By starting the conversation with them about her anxiety it has allowed us to openly communicate with each other on how we can help things go smoothly for her. For example, we now do her culture at the end of clinic versus with vitals, they knock softly at the door and pause before entering, they know singing songs helps Caroline relax, and they allow her to touch medical tools before they examine her.

Count to ten

Vitals were always a huge source of stress for Caroline. A coping tool we now use to help her get through them is counting to ten. For example, when they place the pulse oximeter on her finger, I count ten in a sing-song voice. Once we reach "ten" she knows she can remove the oximeter. Having an end in sight really helps her keep her anxiety at bay and gives the nurse enough time to gather accurate vitals. You could also say the ABCs or sing a short verse of a song together during each vital check.

Validate the anxiety

I often tell Caroline, “It’s okay to feel afraid. You are safe. I know you can do this." or "I feel afraid sometimes too, that's when we can choose to be brave." I want her to know she doesn’t need to hide her fear or be embarrassed about having a difficult time. Suppressing anxiety is not an effective long-term treatment. Validating someone's anxiety can make it seem less overwhelming for them and allow them to feel more connected to you as they work through it.

Connect with a professional

A Child Life Specialist is a professional trained to help children cope with medical appointments, procedures and lab work.  Many children's hospitals and CF clinics in the U.S. have access to Child Life as a free resource for families. We ask the Child Life Specialist to meet us at the beginning of each clinic appointment. They bring toys and games based off Caroline's age and interest. Sometimes they stay and interact with her and other times they bring things for her to explore, and they leave if it best suits her needs that day.

You can also consider connecting with a child psychologist. They can help you, as the caregiver, find creative ways to help your child cope with that they are experiencing. We spoke regularly with a child life specialist and a child psychologist in the first few months of navigating Caroline's medical anxiety. Their insight was invaluable to us.

Be aware of sensory overload

Anxiety can heighten our senses and sometimes cause us to be easily triggered by sensations that typically do not bother us. Especially at a younger age, having an overwhelmed sensory system can lead to tantrums and meltdowns during clinic. For Caroline we keep this in mind by dressing her comfortably for clinic, avoiding tags or clothing with scratchy seams. We sometimes dim the lights in our exam to reduce the sensory stress her body is feeling and ask people entering the room to avoid making loud, sudden sounds if possible.

Give them control

Giving Caroline a sense of control over what’s happening to her during appointments has been an effective way to reduce her anxiety. For example, if Caroline is allowed to touch the stethoscope or flashlight before her doctor uses them to examine her, it diffuses the fear she has surrounding the tool. Using this technique consistently for several visits eventually led Caroline to even help the nurse and doctor place the tools on her body for the exam.

Choices are another great way to instill control. Sometimes we ask Caroline, "Do you want to the doctor to listen to your lungs or check your ears first? You choose." If your child is non-verbal, you could use a visual schedule with pictures arranged by velcro to help them show you the order of events they would prefer.

Safe exposure to triggering items

Caroline went through a phase when blue examining gloves really triggered her anxiety. She knew when someone had them on they would probably try to touch her. I asked her nurse if we could take some of the blue gloves home. I let Caroline explore and play with the gloves however she felt comfortable. Sometimes I would playfully put them on and play peekaboo or do silly dances with them other times I just set them out on the floor or kitchen counter as she tolerated them to increase her exposure and reduce her fear around them.

Be mindful of your own anxiety

I quickly learned that Caroline wasn’t the only one anxious during medical appointments, I was too. I have my own trauma from our journey, as her mom, and that carries over into how I feel during her clinic visits or lab visits. I realized after a few months of helping her cope with anxiety that some of her anxiety was stemming from her picking up on my own stress. I started to intentionally be positive about appointments, take deep breaths, and show Caroline that mommy feels safe in this space so she can too.

Choose a mantra

Having a mantra, calming song or short phrase you can say to your child repetitively during hard moments can be very centering for them and you.  I often sing Caroline’s favorite songs in her ear during difficult moments over and over again.  I also sometimes say, “You are strong, you are brave, you are safe, you can do anything.” Say whatever you feel will comfort your child most.

Create a visual story about clinic

We created a scrapbook with printed pictures of the hospital entrance, clinic check in desk, vitals area, exam room and each member of Caroline's team (with and without masks). This picture book is what’s called a “social story” and it helps children of many developmental backgrounds cope with new or challenging experiences. We look through the book together before appointments and talk about what happens at clinic appointments. This is a great opportunity to understand what specific elements of clinic are triggering to your child as they may be more likely to talk about them outside of the environment.

Everything we do to help ease Caroline’s anxiety is tailored to her specific personality and needs. Every child is different; what calms one may not calm all. It took time to learn what would help her cope but with time we began to see massive improvements in her ability to manage her anxiety and feel more confident in medical settings.

Has your child experienced medical anxiety? What were some strategies that worked for you? Will you be trying any of Holly's strategies? Share with us in the comments!