Norway: Book about ME and invisible illness- "But you don't look sick" by Ragnhild Holmås

Ragnhild Holmås has suffered from ME for nine years.
She is now publishing a book where she challenges prejudice against chronic and invisible illnesses. She's inspired by Maya Dusenbery and her method is to use a combination of humour and information.

There will probably be several articles and reviews coming in connection to the book launch, so I thought it might be useful to have a separate thread.

I think she's such a good spokes person against prejudice towards chronic illness and for more research and knowledge about ME. Others here might enjoy reading about her, even though it's through google translate.

Here's an interview from today by her publisher Cappelen Damm

- It will take time to change ingrained attitudes, but it's far from impossible. The first step is to become aware of the prejudice. My book is a small contribution to this.

And then there needs to be a pouring of knowledge.

- The authorities has to come in with research funding, as they did after intense pressure from the LGBT movement to research HIV and AIDS, which you can now live well with. Knowledge can change everything, quickly. If prejudice disappears, a heavy burden will also disappear from the shoulders of sick people, says Holmås.

Boktips: Ragnhild har levd i "karantene" i ni år. Nå tar hun kampen mot fordommene mot usynlig syke
google translate: Ragnhild has lived in "quarantine" for nine years. Now she is fighting the prejudice against invisible illness

 

We have yet to see the ME community use the same tactics the AIDS activists / ACT UP used to great effect.

And that type of 'in your face' activism will be harder moving forward in a constant COVID world.

Also, advocacy and fundraising for ME is exponentially harder now that the whole world is focused on COVID.

But if a significant number of post-COVID survivors develop ME, COVID may be the best thing that ever happened to ME research funding, treatment, care and support.

Especially if some of those survivors who develop ME are politicians and celebrities.

 

What's remarkable is that this will lead to the usual interviewing of people who are themselves the problem to comment on it, essentially Devil's advocates except not symbolically, literally people arguing against the life-saving changes that are needed simply because it would otherwise destroy the ideology they have adopted. They will misrepresent the experience portrayed, push a bunch of lies in response and ultimately continue to not only do nothing but actually make things worse.

Because that's the bitter truth of the matter here, that the problem is medicine itself. When it came to AIDS, the stigma against homosexuality and drug users came from the culture itself, stifled medicine against acting. In the case of chronic disease, the discrimination comes from medicine itself, in fact would not otherwise exist. It exists in the wider population but entirely as a response to the cruel discrimination medicine itself practices.

In hindsight it turns out to have been easier to make a major societal shift that stopped seeing homosexuality as deviant than for medicine to perform the least bit of self-reflection about its own major role in a similar human rights disaster, let alone take meaningful steps to fix it. It still exists, but it's not really possible anymore for a physician to be overtly discriminating against sexual orientation or drug use. And yet it isn't just acceptable to discriminate against some diseases, it is effectively part of guidelines, taught in medical schools and forms the basis of most advice given on the matter.

At least the record builds on itself. Because meanwhile psychosomatic ideology remains stuck at the exact same place it was a century ago, it does not progress or build on anything, only the branding changes, ever so slightly. So while those accounts of a broken medical system accumulate from patients' own perspective, the perspective of the ideologues is always the same, always having to insist that nothing's wrong in response to people explaining that not only are things wrong, they are irreparably broken, requiring either a massive shift away from psychosomatics, or time. Time that means lives. Lives wasted for the sole purpose of pushing a mediocre failed ideology. And somehow we have to give more time to those who are the problem than those suffering it.

 

Unless they call it Post COVID Syndrome? They don't call PPS (post polio syndrome) ME.

 

Great interview with Ragnhild Holmås about her book in the women's magazine KK.

It is almost nine years since the hard-working, social and energetic 23-year-old Bergen girl woke up in bed and felt so muscle-bound and sick that she could not stand on her feet. You know that feeling after a night on the dance floor in high heels? That's how Ragnhild describes it. It was just that she had been drinking tea and gone to bed early the day before.

...
In her book she writes about past grief and future grief. The first is the grief of all that could have been. What has already been lost. Friendship that one failed to maintain, or establish. All the moments missed. The job you couldn't have. The holidays you didn't celebrate. The parties you didn't go to. Ragnhild describes it as mental ulcer. The future grief is the thought of everything that may not be. And as the years go by, future grief becomes past grief.

...
- I have a hope with small h. The hope with small h is about being able to be chronically ill without being ashamed, without being talked about as an expense, a burden, in the newspapers. It's also about living a meaningful life, though I may never fully recover. Which is still Hope with big H, says Ragnhild, adding:
- Hope and accepting the situation I am in at the same time do not exclude each other

KK - ME: Jeg skammet meg over å være syk

google translation doesn't seem to load properly..
https://translate.google.com/transl...vet/jeg-skammet-meg-over-a-vaere-syk/72371998

 

Review from the newspaper Dagbladet from a reviewer who is also a nurse.

Slår knockout på skeptikerne
google translation: A knockout for the sceptics

"Diagnosed laziness and epidemic hysteria" . These are typical characteristics of myalgic encephalopathy, or ME, both among physicians and the general public. If you, like me, are one of many who are deeply skeptical of the diagnosis, you should read this book.

...

If there's anything this book definitely does with me, it is that it will make me a tad more humble next time I meet someone with a chronic illness.