Why "seeking attention" can be a good thing

Updated: Sep 3

Last week was ME/CFS Awareness week.

I would say it was a very successful and positive week! Many stories have been told, many voices have been heard. There is still a long way to go, but I have a good feeling that positive change will come.


I sometimes hear people getting accused of seeking attention when they post about their illness and share their stories. But the thing is... we need to get attention. We need our voices to be heard. Be it from people within the medical field, politicians or friends and family.

It is devastating to be diagnosed with a chronic illness. But it is even more devastating when you realize, that many doctors haven't even heard of the illness before, or some don't even take it seriously. There is so much misinformation out there about #mecfs, which often leads to mistreatments, or to medical professionals shying away from it. Which then leads to people not being able to get treatment at all, because there are not enough doctors who have knowledge about it. It is in fact a bit of a vicious cycle.

What we cannot forget is that non of it is the fault of the patients. It is not our fault that so little research has been done. That for years, the illness wasn't taken seriously enough. That all that misinformation is still out there.

This is why we choose to speak up about it. Fighting for recognition, for more funding and a better understanding of the illness is all we can do. And I am thankful for every person who does, who is brave enough to share their individual story to help other people.


And people also should remember that sharing so much private information and going public about your diagnosis is very scary.

I think we are all scared of the negative consequences it could have, if we share our stories so openly. But so many people choose to do it anyways, because there is so much to gain from it and I'm thankful for every person who helps to raise awareness. The more people know about ME/CFS and the current situation, the better are the chances that things can change.

Reading so many stories in the past week was very moving and the resonance was amazing. I am very positive that things are about to change for the better for our community.


Thanks to the people who are brave and strong enough to fight for their rights, beautiful projects could happen around the world.

Here in Austria landmarks all over the country were lit in blue color to raise awareness. What a beautiful and strong sign of solidarity!


Wiener Riesenrad (Ferris wheel in Vienna, lit in blue color to raise awareness for ME/CFS)



I also want to tell you about my interview with Zissi from wendepunkt.org.

A few months ago Zissi asked me to interview me for her podcast, and we finally could make it happen! She published the interview last week, it is in german language!

She was very empathetic and sweet, our conversation was so nice and I am so thankful she gave me the chance to speak on her platform.

You can listen to the interview here!

Please check out her blog, she is a wonderful person with an amazing vision!


I am glad that our cause got so much attention in the ME/CFS Awareness week. Without the attention, no change would be possible. I am so deeply thankful for everyone, who contributed, and I am hopeful that positive change will come.

 

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