Amanda Stansfield

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Amanda Stansfield

Public speaker - Caregiver & Dravet Syndrome advocate

10/04/2025

When I was in Madrid speaking at the Dravet Syndrome European conference I had parents and caregivers tell me how lonely, isolated and sad they were. They’ve felt anger, sadness, grief and guilt and had no one to share this with.

As much as informing the doctors, researchers and scientists, not to mention the pharmaceutical companies how devastating caregiving can be what is truly needed is companionship.

To know that you are not alone.

If you have felt something similar please comment on this post, it allows others to see they don’t have to suffer in silence.

07/04/2025

Back home from sharing how Chronic Traumatic Caregiver Stress manifests at the conference in Madrid.

Speaking with some of the world’s leading experts and researchers on Dravet Syndrome and now filled with so much gratitude knowing how willing they were to learn how this devastating disease impacts more than just the patients life.

I was also there to talk about the alienation that occurs when our children turn into an adult patient and how vital it is for more research, interest and support for the adult population. Not to mention how the continuum of an omnipresent crisis that doesn’t magically vanish.

10/02/2025

It is so difficult to talk about the unique struggles we face as parents of children with disabilities.

We fear being judged, misunderstood, ignored, marginalized, dismissed, and at worst discriminated against.

Your friends, family and coworkers won’t know your fears, thoughts and the emotional struggles that you live with. And that OK.

But I encourage you to be vulnerable and find “your safe tribe” to open up and speak the unspeakable truth of what it’s like to live with CTCS. (Chronic traumatic caregiver stress)

Don’t be afraid to admit you’re exhausted, had a bad day or feeling sad. Part of the healing journey (which has no true ending) is learning to speak our truths with loving awareness, to not hide behind the disease and to allow our mental health the validation it needs.

What else would you like others to know? What are the unspeakables you are afraid to say?

Would you comment on this post, to remind each other that we’re not alone and there are people out there who truly understand?

💖 Amanda

27/01/2025

I often hear, “I’m not doing enough” or, “there has to be something else I can do”

It’s so easy to fall into the trap of self-criticism, believing we should always be doing more—more therapies, trying new medications, entering a new drug trial, more advocacy etc.

This can be a way to bypass the grief or CTCS you might be experiencing. Using busyness as a way to protect the parts of you that are hurting.

This belief comes from a place of love and determination, but the constant push for progress can quickly become overwhelming and cause more stress.

In the midst of therapies and endless to-dos lies a valuable truth: we’re also here to live and allow our children to live fully. We don’t have to exist in a constant state of “doing.“

When we are present, we have the privilege of seeing our children, caring for them, and loving them just as they are, while permitting ourselves the space we need to rest.

Your needs are worthy of tenderness too.. who else has a hard time speaking up for themselves?⁠

23/01/2025

Your needs matter too
Your mental health matters
Your emotional health matters
Your physical health matters

Self-care is important. But many parents and caregivers of children with disabilities or complex medical needs are so exhausted, overwhelmed, and without resources to focus on their own needs.

If you have forgotten how to speak up for your needs-trust me you are not alone.

A gentle reminder to pause. What does your nervous system need today?

Would you comment on this post, to remind each other that we’re not alone and there are people out there who truly understand?

💖 Amanda

❤️ PS. Share this with someone who could use a gentle reminder of their incredible value.
✨ Follow to support your caregiving journey.

20/01/2025

Living with Chronic Traumatic Caregiver Stress is a complex, often lonely lived experience filled with fear, grief, and countless barriers—emotional and financial.

What makes it even harder is how isolating it can feel when society doesn’t believe or support caregivers. The judgment, disbelief, and lack of help can deepen our inner wounds and make the healing journey even more overwhelming.

And even when we heal, the trauma doesn’t simply disappear.

Healing takes time, understanding, and a safe space to process the pain and rebuild.

If you’re a caregiver looking for support, connection, or just a space where your experience is understood, you’re not alone.

I host a caregiver support circle every month in the Community Hub and welcome you to join us 💙

DM me or simply comment “CTCS” below and I’ll send you the details.

17/01/2025

It’s the chronic trauma caregivers experience. Naming it gives us the power to heal.

17/10/2024

But… how are you really?
Let’s start speaking our truth…

Only then will our friends, family and the community at large understand that Chronic Traumatic Caregiver Stress is real.

16/10/2024

What the world cannot understand is that we are two different people. The person I was before caregiving and the person I am now.

15/10/2024

Our stories may differ, but our ache is the same.

12/10/2024

Thursday was , I intended to post something inspiring, but life—caregiving life—had other plans.

After 8 weeks of seizure freedom, Stella’s seizures returned with a vengeance and destroyed all sense of calm that I had been feeling.

Welcome to Mental Health Day, right, a reminder that stress, anxiety, sadness, and overwhelm can come from anywhere, at any time, and in any form.

I first start overthinking and planning for the worst-case scenarios.
Then my body contracts and I start to feel tension and tightness in my shoulders. I lose my appetite—or the opposite—I start snacking out of nervous energy.

So this is a reminder— to myself and to all of you who are struggling to keep some sense of calm in your mind and body that your mental health matters every single day.

On challenging days, like Thursday, when I was really sad. I allow myself to cry. I invite in the emotion of sadness. I also tell my husband and younger daughter that I am sad. This is especially important for my younger daughter to see that I can name what I’m feeling, and allow the space my mind and body need to release that energy. Easier said than done when life is busy, and you have school pick up, or drop-offs, work to finish, dinner to make etc. But, it’s about finding a micro-moment to shift what needs to be released.

My invitation is for you to remember to make space for your mental health every single day, no matter how busy life gets. And keep the conversation going that your Mental Health matters beyond just one day.

Today is a new day, A fresh start. So take a deep breath in with me, and exhale release.

Share below what you are doing for your mental health today ⇩

05/10/2024

You are seen.

Chronic Traumatic Caregiver Stress is REAL. You are not alone in what you are feeling.

Our comments section provides caregiver connections, conversations, & support. When you comment, you help others in the community know they are not alone⁠

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