Staying Alive Is My Protest (blog Anil van der Zee) (discusses issue of suicide)

Grigor

Grigor

Senior Member (Voting Rights)
Trigger warning: discusses issues related to suicide

With sadly more and more people with ME dying, sometimes weekly, often through suicide or euthanasia, I’m often asked why I keep holding on with severe ME and if I ever considered euthanasia. The answer isn’t simple, but this is how I think about it.

A major reason why I keep going is the decades of injustice done to the ME/IACI community. And while certain BPS researchers would rather we shut up and vanish, I feel I have to keep going until things are set right, and stay as loud as possible until it's the end of the road for me.

“These scientists and health care professionals have caused so much harm to millions of people worldwide. Including myself. They are taking zero responsibility for it. I mean everyone makes mistakes, but at least apologize and admit that you were wrong. Instead we get denial, doubling down on the flawed science, pointing fingers at others, (behind the scenes) smear campaigns of patients, and DARVO manipulation. In my opinion, that’s incredibly unprofessional.

For me this has been an important driver to keep going. I’m simply not willing to give up my life for a bunch of arrogant and unprofessional…(put any fitting word here). I refuse to do that.”

“The fact that young people are even having to consider euthanasia due to the abysmal situation created by the scientific failures, the political neglect, the medical gaslighting, the absence of care, the lack of safety is unacceptable to me.”

“That suffering is unnecessary. It can be avoided if those who should, would actually give a damn. The fact that people die due to suicide or euthanasia is therefore one of the greatest forms of injustice. The fight against the injustice done to the patient community is a big driver.

I just can't and won't shut up about it!!!”

Read the rest of my blog here:
anilvanderzee.com

Staying Alive Is My Protest - Anil van der Zee

With the sadly increasing number of people with ME passing away, not uncommonly dying due to suicide or euthanasia, sometimes weekly, I often get asked why I keep holding on with severe ME, or if I ever get depressed or have ever considered euthanasia. The answers to this are complex, and it's...
anilvanderzee.com anilvanderzee.com
 
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It is. Equally passionate and articulate as ever @Grigor

When I was in my late teens I was severely depressed, I self harmed and was at times suicidal. I have the scars. After recovering from that and living life for a while ME/CFS hit. I’ve now been severely affected longer than I was depressed and despite some dark times have never felt like I did then and have never wanted to be alive more. I think most with ME/CFS want to live. Just not like this. And particularly not to be (mis)treated like we are.

Theres no way I’m going without a fight.
 
I really need to read messages like yours. I truly do.

Because today, at just 42 years old, with a wonderful wife and two children whom I love deeply, my mother has finally given her consent for me to consider assisted suicide in Switzerland. Apparently, this organization requires parental consent for anyone under 50, probably for legal reasons, although I don't know exactly why.

I'm going through an absolutely terrible time.

I've been ill for almost five years, seriously struggling since 2023, and severely, if not very severely, affected since March 2025. For more than a year and a half now, I've spent 98 to 99% of my days bedridden. My life has essentially been reduced to getting up to use the bathroom and occasionally making it to the kitchen. The rest of the time, I'm lying down. That's pretty much it.

And today, I simply can't take it anymore.

It's an incredibly difficult feeling to put into words, especially when you have a loving family and so many reasons, in theory, to want to live. But my daily existence has become absolutely unbearable. I'm desperately searching for a way out, for something to hold on to, and I can barely find anything anymore.

I come to this forum several times a day, hoping to discover some scientific breakthrough, a promising treatment, something that might finally change our lives. But I also know how slowly research progresses. I know some people will tell me that things could improve well before ten years from now. I sincerely hope they're right. Yet ten years almost seems optimistic for a disease whose underlying mechanisms we still understand so poorly.

And when every single day is already an ordeal, how are you supposed to imagine enduring another ten years?

So yes, reading your message makes me think. It reminds me that there may still be reasons to hope, even when I can no longer see them myself.

But I also have to be sincere: right now, I feel that I've made my decision. I simply cannot imagine enduring this existence for another two years. And now that my mother has accepted my decision, that possibility feels much more real, even though it obviously comes with immense sadness.

I'm not saying any of this to discourage anyone, or to dismiss the possibility of future scientific progress. I'm simply describing my reality, what it means to live with such a severe form of this illness, day after day, without knowing whether you'll ever recover even a small part of the life you once had.

Anyway, thank you sincerely for your message. I really needed to read it today.
 
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I hear your reality @neophyte32, and it is heart-breaking.

Yes, there are real reasons for hope. There is more potentially useful research being done than there ever has been before.
And, I'm with @Grigor. I want us to be loud, to keep annoying those who block progress, even if the only way we can do that is by continuing to exist.

I wonder if a concern about being a burden on others is a factor in some people deciding that euthanasia is the best thing to do? In which case, I hope that everyone understands that a person with ME/CFS who keeps enduring is doing something significant for humanity, and everyone who helps them to endure is doing something significant too.

You write so well @neophyte32. Could you perhaps manage to tell more people what this illness is like?
 
Hutan said:
I hear your reality @neophyte32, and it is heart-breaking.

Yes, there are real reasons for hope. There is more potentially useful research being done than there ever has been before.
And, I'm with @Grigor. I want us to be loud, to keep annoying those who block progress, even if the only way we can do that is by continuing to exist.

I wonder if a concern about being a burden on others is a factor in some people deciding that euthanasia is the best thing to do? In which case, I hope that everyone understands that a person with ME/CFS who keeps enduring is doing something significant for humanity, and everyone who helps them to endure is doing something significant too.

You write so well @neophyte32. Could you perhaps manage to tell more people what this illness is like?
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Just a reminder to all that @neophyte32 has already done an amazing, inspiring job telling more people about what this illness is like than most manage in a lifetime:

https://s4me.info/threads/i-feel-like-gregor-samsa-in-kafka’s-the-metamorphosis.51982/post-720684


Thank you once again, @neophyte32. I am so very, very sorry for the depths of your suffering. I remain grateful for all that you share here, which means so much.
 
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