I have great respect for all carers. We take on roles that we never thought we would need to take on. We provide all the physical, emotional, and spiritual support that we can.
Anna met Beth 14 years ago, and they enjoyed a busy family life with their young daughter, while both working full-time.
Following a health crisis, Beth was diagnosed with ME/CFS seven years ago, which profoundly changed everything for the family. Beth is no longer able to work, and as well as relocating more than 200 miles away together to live in a more manageable home in Scotland, Anna now works part-time to ensure that she is able to facilitate any support that Beth needs.
“I met Beth in 2011 through a mutual friend and we’ve always got on incredibly well. Beth had a daughter from a previous relationship, and we quickly became a blended family. I love the role of being a parent to Jay, who is now 24, it brings me great joy.
We got married in 2014 and both had busy active lives, and full-time professions. In 2016, Beth had a mental health crisis. It was a very challenging time, but she got through it. Following this, she started to experience ME symptoms and was eventually diagnosed with ME.
At the time, we were living in South Yorkshire and our situation changed from having two full time salaries, down to coping with just one. 2016 felt like a year of turmoil, personally, nationally and globally. For these reasons, we decided to move to Scotland for a more simple, rural way of life, and today, our life is quieter and calmer than it once was.
I chose to work part time as a health care support worker in occupational therapy to be closer to home and help Beth whenever she needs it.
It’s been hard, but we got through it together – it never occurred to me not to support the people I love most in the world. Beth’s illness also took a toll on Jay because the parent they had relied on, was no longer the way that she used to be.
When I was younger, my friend who lived next door had ME, so I have an understanding of the condition, and because of this, I already knew the limitations that ME puts on someone’s life. I’m also well aware that if you’re not in someone else’s shoes, you can’t fully understand, but I have empathy; ME profoundly changes everything.
One of the biggest parts of being a carer is the advocacy role, it’s a huge role for carers. For instance, Beth is fiercely independent and I am very respectful of her limitations. I may help her communicate her needs, ask whether she needs me to join her at an appointment, check to ensure the batteries in her wheelchair are charged, and so on. I take on the stuff that Beth is no longer able to do, but we also do things together that she can no longer do completely independently.
As an example, Beth loves swimming. If she has the energy, she’s able to go every 3 or 4 weeks, and I’ll drive her there, carry her bags, help her get changed, and help her get a ticket.
We also have a camper van, and I sometimes drive us for weekends away to visit places. Beth jokes that she knows all the car parks well – because if she’s unable to get out of the campervan, just seeing the outdoors makes such a difference. She can sometimes sit and have a coffee but we can’t do the activities that we used to. ME limits the experiences you can share, but I facilitate activities as much as possible so that Beth can participate.
In the evenings, I make the dinner, and our daughter washes up because it would be too much for Beth to do, but we’re able to share a meal together or watch some TV. If she has an energy crash, then she’ll be in bed.
With ME sometimes the best care is to suggest not doing something.
It’s an invisible disease. Most people don’t see what she goes through. For instance, people may see her in a wheelchair one day, holding my arm and walking the next, and then not see her for days because she’s in bed. It’s a cruel condition which has changed everything.
The condition has the biggest negative impact on people’s lives, but it doesn’t get enough focus in government terms or research terms. I’m aware that other conditions warrant research too, but it’s a real struggle, there are so many people who are living with ME who have lost their lives physically and metaphorically. Many people with ME are not in a fit state to enjoy the simple things in life that are taken for granted by most.
It feels like ME is not taken seriously enough by the benefits agency, by the medical profession, by research organisations – and this is really disheartening for people with ME and their carers.
In Scotland, there are currently few healthcare professionals who have a specialist interest in ME/CFS. There are pockets of support for carers though, which I haven’t accessed.
I have great respect for all carers. We take on roles that we never thought we would need to carry out. We provide all the physical, emotional, and spiritual support that we can. It’s hard and it’s unacknowledged.
I’d just like Beth to be able to enjoy her life as she used to.
The ME Association joins Carers UK and charity supporters Age UK, Carers Trust, MND Association, Oxfam GB,
Rethink Mental Illness, and The Lewy Body Society to seek increased visibility and raise awareness
of the inequalities carers face on a daily basis
