ME/CFS included in article on long Covid and relationships

[southwestforests]

Just came across this which equally includes ME/CFS.

Long COVID will take your health, your wealth — then it will come for your marriage​

• By Hayley Gleeson
• Topic:COVID-19

Tue 26 Dec 2023

https://www.abc.net.au/news/2023-12...ealth-damaging-relationships-crisis/103205564

Longing for life

One of the most painful lessons Rob O'Brien has learned in the seven years his wife has been sick with ME/CFS is that patients suffer enormously, but the knock-on effects on family members are massively underappreciated. ME/CFS or long COVID "comes for one", he says, "but takes us all".

A British-Australian writer and filmmaker who lives in Amsterdam, Mr O'Brien has grown weary of explaining his wife Marjolein's illness to people who just don't get it. Is she getting better? Aren't her treatments working? Isn't she going on holiday with you?

"There's an expectation that she's going to walk out and everything will be normal again," he says. "They don't understand that … some people don't get better, they don't recover. And that's a frustrating role to be in as a carer because you're pretty much explaining full-time."

Before she developed severe ME/CFS – likely triggered by glandular fever's Epstein-Barr virus – Marjolein was an active mother of two, a talented marketing manager, a woman who once competed in Expeditie Robinson, the Dutch-Belgian version of Survivor. Now, she's confined to her bedroom. "A good day is if she can have a visitor for 15 minutes … and she's able to go downstairs and lie on the floor and have one conversation," Mr O'Brien says. "That's a really good day."

As Mr O'Brien sees it, the rumbling public health crisis of long COVID and ME/CFS is too low on governments' lists of priorities, "perhaps because they were all happy to be 'done' with COVID and move on". "It doesn't play into the [narrative of], 'We conquered COVID and now we're preparing for the next pandemic'," he says. But unless the costs to individual and community health are acknowledged, he says — unless governments invest in coordinated education campaigns and finding effective treatments — the problem will only get bigger.

"People need to understand that a lot of people have been disabled in quite a short period of time," he says. "I just think there is a general lack of empathy. If you've lived a healthy life, you can't imagine your life suddenly being put on pause or stopped. And I'm trying to make that clear to people by saying, 'Take your friendships, take your social life, take all the things you love — take hanging out with your children in the park — and remove that. Now what do you do?' Because for me, that's the only way to get people to kind of understand."