Charlotte and her husband, Tom, live together and both have muscle wasting conditions. Charlotte shares the challenges they face, and the declining support that’s available which has a big impact on their day to day lives.
“It’s hard to live well when we’re being deprived from basic rights like a shower.”
When Tom and I moved in together, there was of course a lot to co-ordinate and put in place, but we felt supported by the health care professionals around us. Now it feels like that support system has shrunk through. Now, we feel alone.
Getting advice when symptoms change or something new arises can mean a six-month wait for a clinic or even a phone appointment. That uncertainty increases our anxiety every day. The future feels unpredictable.
It’s not just access to healthcare professionals that’s challenging, the actual information we’re given is sometimes wrong. Now Tom’s older, we’ve spoken about the fact that if his condition had been explained better to him, he would have enjoyed life a lot more. He was never told that certain symptoms weren’t dangerous, so he just assumed the end of his life was drawing closer and closer.
The lack of support stops us from fulfilling our parental responsibilities
A close friend of ours passed away last year, and we made a promise to help care for their six-year-old son, alongside his grandmother. We feel like parents to him. We want to be that safe, stable presence.
But again, the system makes it difficult.
“We don’t get any support because he’s not our biological child. And when equipment or care isn’t in place, it limits how much we can do to support him. We feel responsible, but powerless — and that’s incredibly painful.”
We want to help others. In our minds, we feel able. But physically and practically, the barriers are overwhelming.
The wait time for equipment is unbearable
A big challenge for us is the additional costs we face due to our disabilities. The increasing delay on getting equipment has added to this. It’s taken two years for me to get a shower chair. When Tom’s wheelchair broke, we waited three months for parts. We ended up having to purchase a specialist arm chair to avoid him being confined to his bed for three months. It shouldn’t be like this.
“We spend nearly half our income on electricity, powering four ventilators, two wheelchairs, and essential medical equipment like wash-dry toilets and air mattresses to prevent pressure sores.”
Hot water is another major cost. Muscle pain and circulation issues mean that regular hot baths and showers are more than just comfort — they’re pain management. But every shower adds up. We also have 24-hour care, including waking night shifts. That means heating stays on overnight, carers charge devices, use lighting and make hot drinks.
People often assume everything medical is covered by the NHS. But we pay for things like distilled water for our ventilator humidifiers, incontinence pads, skin creams, and even essential equipment when waiting times stretch beyond what’s safe.
Even food is more expensive. We both have swallowing difficulties, so we often rely on smoothies or ready meals — but soft, high-quality food is costly.
Getting married cost us our benefits
Tom and I have been happily married for six years, but financially, marriage came at a price. Our benefits were reassessed as a joint claim, meaning we lost a significant portion of our income. That cut has made everyday life harder.
“We dream of doing more together — holidays, time away — but those dreams are always pushed aside to cover basic costs.”
Taking four carers with us makes even a budget holiday unaffordable. And saving is next to impossible.
We want to work, but the system stops us
We’d love to work. Not just for financial reasons, but to feel more fulfilled and independent. But the benefits system makes that feel like a risk rather than a step forward.
We’ve explored permitted work within our current benefits, but the Department for Work and Pensions (DWP) often push back. They argue we shouldn’t be able to work if we need the level of care we receive. If we tried to earn more, we could lose our Housing Benefit or Council Tax Reduction, leaving us worse off overall.
Voluntary work has been the safest option, but even that hasn’t been smooth. We were accused of not declaring it properly and lost six weeks of benefits. Eventually, we got them reinstated, but the stress was immense. And the truth is, it’s hard to even think about work when you’re struggling to meet basic needs like being able to shower regularly.
It shouldn’t be this hard
We’re not asking for luxuries — we’re asking for the basics. To live safely. To contribute. To care for someone we love. But the system constantly puts those things out of reach. We’re doing our best, but it shouldn’t be this hard.
