Behind The Curtain: 6 Things People Who Don’t Have M.E Don’t Understand

ENTERTAINMENT producer and performer Donna Fleming is best known in Northern Ireland as the country’s leading Dolly Parton tribute act.

Stepping onto some of the biggest festival and venue stages in the country and blasting out the superstar’s most popular hits, not many know of Donna’s battle with a deteriorating medical disorder.

Donna performing as Dolly Parton
Donna performing as Dolly Parton

Donna, a mother of two, suffers from M.E (Myalgic Encephalomyelitis), a fluctuating neurological disorder caused by multiple symptoms which sees her confined to her bed, exhausted, unable to concentrate and in pain over 70% of her time.

And despite being sick behind the curtain, Donna is planning to battle her illness to perform for as long as she can.

Donna Fleming
Donna Fleming

“I love performing. And the way I see it is that I would be wrecked anyway and in my bed, even if I wasn’t doing a Dolly show” she said, adding: “I go onto various forums to talk to other M.E sufferers, and it’s so, so sad. For some of them, it’s their lives. It’s all they have. I don’t want to be like that. It’s an awful thing to say but I’d end up dead if I thought my life was just all about M.E.

“The cruellest thing is my mind is still active, it’s just my body that isn’t. And yes, I’ll suffer after a show, I’ll feel like I’ve been hit by a car. But I just have to perform.”

For Donna, fighting the illness isn’t the hardest part of having it. She says that sometimes struggling to get people to understand M.E can more often than not be more draining than the disorder itself.

So, we asked Donna to come up with a list of things to help people understand a little bit more.

6 Things People Who Don’t Have M.E Don’t Understand:

1. Planning

“A person who has M.E has to meticulously plan each and every outing” explained Donna, adding: “We put in place careful strategies to enable us to live as close to a normal life as possible.”

2. Appearance

Donna said: “We appear totally normal to the general public, but we have rested, cooked in batches on our ‘good days’ and ignored advice on those days so we rush about getting stuff done as we are never sure if or when we will get the energy again.”

3. We’re tired of hearing about miracle cures

“We know people say derogatory, mis-informed things about us and we have all heard every ridiculous ‘cure’ under the sun” said Donna.
“Everything from ‘oh my friend had M.E. They started drinking coconut water and now they run marathons’ to ‘M.E? Oh I think I have that. Im tired all the time’.
“People dont know M.E is not about being tired all the time.”

4. The paradoxes

“A lot of the time people don’t believe us that we are sick, or even that M.E exists, and it’s because it can be seemingly contradictory” said Donna.
“I cant speak on the phone, unless I know a person very well as I have no cognitive function to deal with this. It’s a problem with many M.E sufferers.
“But try explaining that to someone when they’ve just watched you sing in front of hundreds of people or took part in a meet and greet session after a gig.”

5. Timing

Donna said: “I cant promise to do two things two days in a row. One day may well floor me for the next few days or weeks.”

6. Personal goals

“What people dont know is we get very angry at ourselves because our brain wants to do things our body wont allow” said Donna.
“Think your worst flu when its a big celebration. Then put that feeling into every day life. Pain, temperature, memory loss, confusion and more. Worst of all, a lot of research would suggest that the majority of M.E sufferers are high achieving people with big ambitions and a lot of determination.”

Do you have an illness you feel people just don’t understand? Why not contact BAM and let us try and help by telling your story. [email protected].

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