Lu’s silver linings

Before Lu got sick she was an out-of-home care case worker and looking forward to finishing her degree and getting married.

She was studying part-time to become a psychologist specialising in family counselling, lived near the beach, was in peak fitness and health and engaged to a ‘wonderful man’.

In one job, Lu was bullied by her supervisor, causing a significant amount of stress. At the same time, Lu developed glandular fever and was finding it difficult to cope with the situation.

“I remember I just pushed through because that’s what I do, I just push through,” Lu says.

She ended up having to leave her job about two weeks later.

“Basically two days after I finished up at that job, I collapsed and ended up in hospital because I couldn’t function,” Lu says.

“I couldn’t sleep; I couldn’t turn off my stress response; I was just having constant adrenalin surges and pressure at the back of my head.

“They couldn’t work out what was wrong with me because my blood tests all came back normal.”

What Lu was actually experiencing at the time was the beginnings of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), brought on by her bout of glandular fever and stress.

“For the next year I could barely sit myself up or stand for more than 20 minutes at a time,” Lu says.

“If I expended too much energy or pushed my body in anyway at all, even emotionally, I would start to collapse and shake on the ground.

“I had constant panic attacks; I couldn’t sleep; I could barely shower myself.”

She wouldn’t be diagnosed for another three years and when she was, Lu says she felt both validated and depressed.

These days, ME/CFS is considered an invisible disability. Lu says it’s very hard to diagnose, because there is no specific test for it.

“They do all the standard tests and they’re always normal,” Lu says.

“You look really good on paper, but it’s not the case in real life.”

ME/CFS changed Lu’s life completely. She was unable to work, her relationship broke down and she moved away from the beach to be with her two children in the mountains.

However since then, things have slowly improved for Lu.

“Eventually the most helpful thing is you start to accept that this is it and focus on what you can do,” Lu says.

“You have little remissions here and there.

“I met my husband in the middle of it all, which was a massive blessing.

“For our first date, he came over and brought me a meal he’d made. It was a whole month before I was well enough to go out for coffee.

“He’s stuck by me since; he’s been amazing.”

Lu has also gotten back into art, something she did a lot before she got sick.

“The iPad is incredible for drawing so I learnt to draw on that. I’m also in the process of trying to create a children’s book,” Lu says.

“I enjoy the anonymity of looking like an everyday, healthy person that just draws for a living.”

Remaining healthy is clearly a challenge for Lu and she identifies as having disability, “because it impacts my ability to do anything I would like to do”.

Inclusion is also important to Lu, which she describes as not being forgotten, not being left out and not being ignored.

“It’s nice when someone says, ‘Well how does it feel?’” Lu says.

“I imagine if you use a wheelchair or have some other really obvious disability, it would still be nice to be asked, ‘How does this feel for you?’”

Lu is positive about the future.

“I think I’m starting to realise that there are people who recover,” Lu says.

“I feel like there could be hope and I have never felt like that before.

“I feel like it’s not impossible.”