Managing Healthcare Anxiety

If you live with complex health conditions such as Ehlers-Danlos Syndrome (EDS), medical appointments can trigger feelings of dread, fear, or even trauma responses. This guide offers calm, clear ways to manage healthcare anxiety, whether you’re dealing with past medical trauma or simply feel overwhelmed by what’s ahead.

Understanding Healthcare Anxiety

What does healthcare anxiety feel like?

It’s more than feeling a little apprehensive before an appointment. For many people with chronic health conditions, healthcare anxiety includes:

·       Physical symptoms; racing heart, nausea, shaking

·       Emotional overwhelm; dread, fear of not being believed

·       Flashbacks or panic linked to past medical trauma

·       Sleep disturbances before appointments

·       Avoiding care entirely, even when needed

If this sounds familiar, you’re not alone, and your feelings are valid. You may be dealing with medical PTSD, a form of trauma that can develop after difficult or invalidating medical experiences. The charity Mind has a great resource explaining this in more detail, which you can read here.

Why It’s Common for People with Complex Health Conditions

Living with complex health conditions often means years of being misunderstood, misdiagnosed, or dismissed. Many people are told their symptoms are "just anxiety" or face disbelief from professionals unfamiliar with their conditions. Some endure painful procedures or invasive tests without proper care or have multiple specialists all with conflicting opinions.

Over time, these experiences take a toll, not just on your trust in healthcare professionals or teams, but on your nervous system. If you find yourself in “fight or flight” mode every time you walk into a hospital appointment or medical setting, which is a natural survival response, it’s important to acknowledge these feelings and know that it’s okay. After we experience trauma, each appointment can trick our nervous system into responding as if it’s a threat.

 

Practical Strategies for Managing Healthcare Anxiety

Here are some practical strategies you can use to help manage the anxiety you may experience in a healthcare setting. You can also find more on my help-guide “Managing Mental Health Alongside Chronic Illness” here.

Ground yourself in the Present

·       Practice deep, slow breathing before and during appointments

·       Bring a grounding object, a smooth stone, fidget toy, or comforting scent

·       Use your senses: Notice five things you can see, four you can touch, three you can hear…

Write an Appointment Plan

Before your appointment:

·       Note your top three concerns or symptoms

·       Write a list of questions

·       List key medications, allergies, and past diagnoses

·       Bring a printed summary if needed, you can find inspiration in my help-guide "What To Include In A Medical Summary"

·       Include space for “Things I want to say but might forget”

Advocate with Structure

·       It’s okay to bring someone to support you

·       If you go alone, consider writing a note like: “I find medical settings overwhelming, but I want to work with you. Please be patient."

·       Don’t be afraid to ask staff to slow down or repeat things

·       You have the right to pause or decline parts of the exam if you feel unsafe

Book Smart, Not Just Soon

·      Request the first or last appointment slot if waiting rooms trigger anxiety

·      Enquire if they have quiet spaces or longer time slots when booking

·      If possible, try to see doctors familiar with your condition. If that’s not an option, consider sending them a resource from a trusted charity to help them understand your needs. For example, if you live with EDS, you could email the Ehlers-Danlos Society’s healthcare toolkit ahead of time.

Use Recovery Rituals

After appointments:

·    Give yourself permission to rest, the emotional energy used can take its toll

·    Do something to help you unwind; watch a TV show, cuddle a pet, go for a walk or do arts and crafts

·    Debrief with a friend, support group, or journal

·    Reflect on the appointment, potentially jot down any actions or follow-up steps for when you're ready

·    Celebrate the act of showing up to your appointment, despite the difficulties

When Avoidance Creeps In

Sometimes, healthcare anxiety turns into healthcare avoidance. If this happens, it can be helpful to try the following;

·    Break it up into smaller steps, starting with simply booking the appointment

·     Use your support network around you

·     Read my help-guide “Building a Support Network: Family, Friends, and Professionals”

·     Consider professional support, for example trauma-informed therapy, EMDR or CBT

For Friends, Family & Carers

How you can support someone with healthcare anxiety

If someone you love lives with a chronic health condition and finds medical settings difficult, here’s what can help;

·       Offer to go with them, even sitting quietly in the waiting room is support

·       Validate, don’t fix: “That sounds really tough, I’m here for you.”

·       Help prepare a question list or track symptoms before the appointment

·       Ask them “How can I best support you at this time?”

·       Stay calm if they panic, and use grounding language such as “You’re safe, I’m here.”

Avoid these phrases

·       “It’ll be fine” (this can minimise their fear)

·       “You’re just overthinking” (invalidates lived trauma)

·       “You’ve done this before!” (this isn’t helpful, especially when anxiety isn’t logical)

Be part of their winding down process

·       After appointments, you can ask questions like “Would you like to talk about it or just watch a film?” or again ask “How can I best support you at this time?”

·       Show respect if they need space, and trust that this isn’t a reflection on you, it's about recovery

 

Conclusion

If you’ve felt unsafe or overwhelmed in medical settings, please know this: you are not alone, and your feelings are valid. Healthcare should be about healing, not re-traumatising. Step by step, you can create a way of accessing care that feels more manageable and less frightening. Remember that fear doesn’t make you weak. It makes you someone who’s survived extremely difficult experiences.

You always deserve kindness, especially from yourself.

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