My journey as a parent
My experience of M.E./CFS began in 2014, when I suddenly found myself navigating serious chronic illness as a parent.
Until then, M.E./CFS was something I knew very little about.
I was frightened, confused and desperately looking for answers. I was trying to understand unfamiliar medical information, communicate with healthcare professionals, navigate education and explain a situation to people around me that I was still struggling to make sense of myself.
And, like most parents, my overwhelming instinct was to fix it.
I wanted to find the answer, make the right decisions and somehow make everything better.
I didn't always get it right
One of the biggest things I have reflected on over the years is how difficult it is to parent when the experiences and instincts you have always relied upon suddenly don't apply.
I was used to encouraging, motivating, problem-solving and helping my family through difficult situations.
But chronic illness required something different from me.
There were times when, with the very best intentions, I pushed when I should have listened. I searched for solutions when perhaps what was needed was patience. And because I didn't fully understand the situation I was navigating, I didn't always respond in the way I would choose to now.
That's something I can look back on with much more understanding today.
Not because I had all the answers then - I didn't.
I was a parent trying to make decisions in an incredibly difficult situation, often without the information, guidance or support I needed.
Who supports the parent?
Throughout that time, most of the focus was understandably on the illness.
But there seemed to be very little support for me as the parent trying to navigate everything around it.
I was making decisions about healthcare, education, family life and the future while also dealing with my own fear, uncertainty and exhaustion.
There wasn't someone saying:
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How are you coping with this?
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Do you understand your options?
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Would it help to talk this decision through?
Looking back, I realise how valuable that kind of support would have been.
What I've learned
A great deal has changed since then 2014. I don't claim that my experience gives me all the answers or makes me an expert on somebody else's child.
What it has given me is perspective.
I've learned about advocacy, asking questions, challenging assumptions, navigating education and healthcare systems, living with uncertainty and making difficult decisions when there isn't an obvious right answer.
I've also learned how important it is to protect the relationship at the centre of everything.
And perhaps one of my biggest lessons has been this:
Supporting someone doesn't always mean fixing the situation.
Sometimes it means listening, learning, adapting and accepting that you don't have to have every answer.
Why I'm here today
Today, I use what I learned from my own experience to support other parents navigating M.E./CFS.
I'm not here to tell you what your child is thinking or experiencing.
I'm not here to tell you that there is one right way to navigate this.
And I'm not here to replace medical or professional advice.
I'm here for you - the parent.
To offer a listening ear, practical perspective and reassurance.
To help you think through the questions you may want to ask, understand the choices in front of you and feel more confident making decisions for your own family.
And above all, to remind you that while so much attention understandably goes towards your child, you need support too.
This is the support I wish I'd had.
Alexa Young
*“Caroline helped me make sense of what was happening in a way no one else had.
I felt so confused by all the conflicting advice, but she explained things clearly and calmly, which gave me so much more confidence in how I support my child.”*
Morgan James
*“Before speaking with Caroline, I felt completely alone and overwhelmed. No one around me seemed to understand what we were going through.
Talking to someone who truly ‘got it’ made such a difference. I finally felt heard, supported, and less alone.”*
Lisa Driver
*“I didn’t realise how much my worry was affecting my relationship with my son. I was trying so hard to help that I was actually pushing too much.
With Caroline’s support, I’ve been able to approach things differently, and our relationship feels so much closer again.”*