Suzie’s employer understands the realities, and the emotional and practical impact of caring. Her employer has put meaningful support in place, which has made a significant difference to her family and work life, and crucially, has made Suzie feel seen, valued, and understood.
"I work full time for the NHS in Norfolk as a health visitor, and my journey into unpaid caring wasn’t something I expected. In 2023, my daughter caught Covid. Over the next 18 months, she developed debilitating symptoms and was eventually diagnosed with ME/CFS.
Before all this, my daughter loved concerts, holidays, shopping, and spending time with family. Today, she attends school part‑time and is working towards her GCSEs, but there are major challenges. A couple of half‑days at school can wipe her out for the rest of the week. She’s often bedbound, unsteady on her feet, dizzy, and trapped in a boom‑and‑bust cycle.
As a mum, it’s heartbreaking. It feels like our family has gone backwards in so many practical ways. Some days, my daughter is so exhausted that I have to help her with basic things like getting to the bathroom - something I haven’t needed to do since she was very young.
As her carer, I’ve also become an advocate against a system that doesn’t understand ME/CFS – I’m constantly chasing for support, and receiving no response, and I’ve even shared the NICE guidelines with the school. Our experience with the education sector has been particularly hard. I’ve been made to feel like a criminal because of her absence. Instead of support, there has been judgement. My daughter has been treated like a number and labelled lazy, and I’ve been labelled an overprotective mother. No reasonable adjustments have been put in place for her exams, and navigating this has left me exhausted, while my daughter feels very isolated – we don’t know how she’s going to cope with GCSEs with no support in place.
In contrast, my experience with the NHS as my employer has been the complete opposite. It is supportive, compassionate, and genuinely carer friendly, and that difference has had a huge impact.
My life now is a constant juggling act. I wear three hats every day - mum, health visitor, and carer. As a single parent to two children, working full time, I often worry the plates will slip. The exhaustion is immense, and I don’t know how long this will last or how long I can sustain it. However, my employer has been fantastic, they see me not just as an employee, but as a person, and as a carer.
The NHS has given me the flexibility I desperately need. I can pick my daughter up from school, as she’s unable to walk that far, or attend her appointments, without being made to feel guilty. They’ve even told me to take extra time afterwards if I need to process difficult news. My colleagues are great too, offering advice and emotional space. It feels like a family, and people have my back. In some ways, I feel like I’m going to work for a break from the demands of life. Everyday the team always ask about how my daughter is, but also ask about me and whether I need to talk.
My manager has gone above and beyond, even spending her own evening researching support options for my daughter. That touched me more than I can say. I’ve also been granted paid Carer’s Leave, something that has eased the pressure enormously.
Being treated with understanding and empathy has helped me enormously. It’s given me the strength to continue doing my job while caring for my daughter, and also given us both the visibility that we would otherwise feel is missing.
I recognise that I’ve been very lucky with my employer, as I’ve had previous employers who I know wouldn’t offer this level of help. For other carers like me, more flexible working and protected, paid Carer’s Leave are vitally important.”
“ Everyday the team always ask about how my daughter is, but also ask about me and whether I need to talk.” - Suzie
With thanks to Suzie and the ME Association for sharing this story.