Our son’s rapid descent into severe ME was devastating. At 16, he had just started sixth form at the selective state college of his choice. Autistic (PDA profile) and a motivated A* student, he studied four A-levels and an EPQ, cycled ten miles daily, had close friends, and a full social life.
Earlier that year, he lost his grandmother. Later, I was diagnosed with breast cancer, which we shielded him from until after GCSEs.
After catching a non-COVID respiratory virus over Christmas, and initially recovering, he began showing worrying symptoms: debilitating fatigue, migraines, dizziness, nausea. Eating and drinking became limited—worsened by new braces. He became bedbound, left education, and could no longer engage socially or with family. His memory, cognition, and focus declined. Watching our precious, bright, active child’s world shrink was heartbreaking.
Medical tests ruled out various conditions. POTS was a possibility, but no local specialist was available. ME/CFS was never raised by NHS clinicians. It was our son, through his own research, who first suggested ME—suddenly, things started to make sense.
Feeling helpless, we sought a private paediatric cardiologist, who diagnosed both POTS and ME. He recommended immediate withdrawal from school, full rest, and medication, which our GP supportively prescribed, along with a referral to the local young people’s ME service. This all unfolded within four months.
I’m no stranger to caring—both my parents had long-term health needs. Our son’s autistic needs have often been masked or misunderstood. Family life has always been complex—our younger son is also neurodivergent (ADHD)—but I still see caring as a privilege. It’s love that drives us to protect and advocate.
His PDA need for autonomy, complicates his care. ME has stolen his freedom, interests, and relationships. The suffering is immense, support is inconsistent. Now 18, he’s been out of education for 15 months, while peers plan for university. He clings to control where he can.
Being his mum feels like hugging a velociraptor. Parenting a teen is always a dance between care and independence, but this illness intensifies it. He needs to know we’re his safe space while asserting his autonomy in a deeply distressing situation.
The Human Cost
There are no battalions marching in when we can no longer stay upright. This was especially true after his serious suicide attempt due to ME suffering. We now live with ongoing fear, uncertainty, constraint and no mental health support. For six months, he hasn’t been left alone for more than a few minutes. The trauma of that day will never leave us.
Carers carry lifelong knowledge of their loved ones needs – we are their care and safety plan, yet we’re not treated as equal partners nor offered much support. We’ve never been offered a Carer’s Assessment. This lack of recognition deepens the emotional toll.
It’s agonising every time I enter his room, with food or drink, only able to whisper a few words due to his extreme fatigue and sensory sensitivities. Inside, I’m screaming—I would do anything to take away his suffering.
There’s guilt and fear we’re not doing enough. Questioning myself endlessly. A constant, layered grief, compounded by professionals’ lack of understanding or integrated interventions. Services are siloed. The lack of a holistic approach compounds stress. I frequently identify current and future needs and risk factors that have been overlooked or ignored, chasing services repeatedly for responses, needing to have conversations about reasonable adjustments prior to any interaction with him. I act as care coordinator, constantly advocating, engaging, and preparing professionals—often repeatedly—because without understanding his autism and ME, his treatment is jeopardized or rejected. The level of energy he expends on interacting can be very costly in terms of post exertional malaise (PEM).
He can’t attend in-person appointments; ME makes them too disabling and could trigger deterioration. My successes in advocating are in securing a closed room in A&E using guidance from Supporting People with ME in Hospital, and being taught how to apply a 24-hour ECG at home.
I thought that by now—my kids being older—I’d have more freedom, time to pursue passions and use my skills. Instead, I work only sessionally for the NHS and a CIC. The future looms heavily. It’s hard to see how this is sustainable, after years of caregiving already. I try to stay present, taking one day at a time. Lack of coordinated support worsens stress, isolation, and my own health. I live with chronic conditions and am neurodivergent—pacing is essential, but not always possible.
Nature offers brief respite. I find peace in the garden—observing wildlife, noticing the seasons. Weeding is therapeutic when I have energy. Exercise, time with friends, breaks away on my own (with my husband holding the fort), help to press pause. But the emotional and physical toll of this illness, the layers of complexity, break pieces off me. How to keep a marriage strong in the midst when there is little time outside the home together? We support one another by giving each other breaks. We sense God strengthens us and gives us His light to keep taking the next steps and persevering.
We rely on our church and a few friends for occasional respite and time with our younger son. It’s a very difficult balance to tread between trying to remain hopeful and positive and being realistic. The grief and pain is visceral. Life often seems like I’m viewing it through a black and white lens. My world has shrunk, and I’m caught in sinking sands. Fellow parents, of other young people with ME, who I have connected with online, having been an amazing source of information, guidance and affirmation.
Siblings
His younger brother is a Young Carer and has lost much of his connection with him. We can’t go out together, or holiday as a family. Even everyday plans require another adult to be present, due to ongoing suicide risk. Thankfully, school offers Young Carer support. Still, the trauma of his brother’s suicide attempt remains with him too.
Nearly 70% of schools claim to have no young carers—yet likely two exist in every classroom.
Final Reflections
We have seen an egregious push to reduce resources. In the case of ME, our lived experience is that the more severe it is, the more invisible you become and the less care you receive. The current government message seems to emphasize a person’s worth purely in their productivity economically, with the changes to PIP and SEND support. It is a dangerous metric that further devalues the most vulnerable. These changes will have a deleterious effect on carers too. It feels like an erosion of humanity and value.
Yet, I affirm that caring is a privilege. It is not easy. It can be isolating, exhausting, and sometimes thankless – but rooted in love. In a world that so often measures people by what they can produce, to care, to sacrifice, is to insist that everyone matters. This is especially important for so many ME sufferers, hidden, abandoned, disbelieved and neglected.
I don’t know what the future holds, but I know this: what we do matters. We matter.