Those who suffer from me must be taken seriously

in the last Podcast episode by Harald Eia and Tore Sagen There are many interesting data about the chronic disease ME.

No wonder the world is filled with prejudice and stigma around chronic disease, when you use constructs belonging to the past: “Many ME patients are stuck in a pattern of thinking.”

You might think that by 2022 we will have come a long way in terms of understanding and openness about chronic diseases, but I was wrong.

Eia and Sagen’s podcast once again shows the importance that we must continue to stand up for ourselves, and for those sick people who just can’t take the fight.

Where we thought when it came to opening up about chronic illness and mental health, we were promptly pushed to the start (put on top) by statements by Eia and Sagen.

We are weak, because battles are fought every day. She struggles to be seen and heard, not least to be taken seriously.

Where once the people hid behind dark curtains, and did not dare to appear, we have now made our way to the point where we dare to speak and come out into the light of day.

Hidden disease comes with a lot of prejudice and stigma.

You are too sick to be healthy, and too healthy to not get sick.

Now that women’s health has gotten a lot more space in the columns lately, and for Harald Ia who sits on the Women’s Health Committee, this is very stupid and dangerous.

So serious that he himself shows prejudice against a disease that robs much of the opportunity to lead a normal life.

It’s not that you get me diagnosed by telling your doctor that you’re a little tired during the day.

It is a very long and arduous process. The average time to receive a diagnosis of ME is actually 5.9 years.

psychological thinking pattern

In the podcast, Harald Eia addressed what doctors told him about what they think the cause of ME is.

They believe that many ME sufferers are stuck in a pattern in which they interpret bad feelings as physical illnesses. “If your neck is stiff due to stress, you don’t think it’s related to stress, you think: There is something wrong with my neck,” he stated in the podcast.

For information, you have ME since 1969 It is classified by the World Health Organization as a neurological disease.

In podcasts, they refer to me as a psychopath, a far cry from the truth.

Just to make it clear; I am not mentally ill. If the solution to recovery was to change the pattern of thinking, surely everyone like me would think well?

Because who wants to spend their youth in a dark room watching plans and wishes for the future fade away?

And nothing should be proven, for it must be known that when you live as my patient, you want what healthy people enjoy.

A little sympathy and understanding

We are a weak group. In my opinion, Eia and Sagen paint a picture of us as ME patients, as creepy, crazy activists to watch out for.

in 2015 Published by the Institute of Medicine (IOM) Report After reviewing over 9,000 peer-reviewed research reports it states: “I am a serious, chronic, complex, multi-system disease that is deeply disabling.”

ME affects all types of people, both sensitive and insensitive, that is, the disease does not take into account personality, as it may seem, as Harald Eia believes.

It’s simply that some people draw worse than others, and so they have to live with the diagnosis and its challenges.

ME is a painful and distressing disease that has not received much needed attention and research.

I am not an activist, but as my sufferer, you have to stand up for yourself and fight for those who are too sick to fight for themselves.

He fights to be heard and seen and for his illness. So yeah, I guess I’m an activist after all.

New day, new battle

I am disappointed. Frustrated with the way they are trying to create a “sense of humor” from a serious illness, which they sadly miss.

And according to the podcast, “I make life miserable for researchers and clinicians,” and I apologize for that. Because I want to get sick, I get stuck in a pattern of thinking that makes the body imagine it is sick.

Today, unfortunately, there is no medication that works for ME patients, and the fact that Eia and Sagen portray us as a burden and also don’t lift us up because we are in it, leaves me disappointed.

I thought we’d come a long way in 2022.

I was hoping for more acceptance, understanding, and openness about chronic diseases in 2022.

I hope this chronicle sheds light on how not to speak in public, especially when you don’t have enough knowledge about something to talk about.

As my mother says. If you don’t have anything nice to say, keep it to yourself.

(Podme and Sagen/Eia have been submitted for criticism, but do not wish to comment. journal.anm.)

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