Venting I don’t want to do this, but I feel like I have no other option

[zoroark]

For the last three years, I've been diagnosed with a rare autoimmune condition that will essentially progressively ruin my spine until I'm barely able to move it (if at all) and in constant pain. I'm already in pain daily. I hate it so much, I hate seeing everyone around me (even those with other conditions) living their lives never having to know what it's like to have this. I wouldn't wish it on anyone, though. I just genuinely can't see a future where I'm ever happy again, or even content with the way my life is going.

All this to say: I really just want to be happy again. I don't want to CTB, but I feel like it's the only way to save myself from a life of pain and limitation, both physically and mentally. Should I just do it?

 

[SchizoPolyGymnast]

I wouldn't do it personally until you start to lose significant mobility. Give yourself a chance to experience a cure, or a viable treatment, or some sort of accommodations to enable you to live your life. Seek out a community that can help you see things from the outside and see a silver lining if possible, even if it's just for research purposes. If things progress with no hope in sight, make a decision before you become physically unable to do it yourself. Does that make sense?

I just read an article about a boy who became the world's first survivor of a rare brain cancer that was previously deemed unsurvivable. So while these outcomes aren't common, I believe they're worth remembering.

 

[zoroark]

I wouldn't do it personally until you start to lose significant mobility. Give yourself a chance to experience a cure, or a viable treatment, or some sort of accommodations to enable you to live your life. Seek out a community that can help you see things from the outside and see a silver lining if possible, even if it's just for research purposes. If things progress with no hope in sight, make a decision before you become physically unable to do it yourself. Does that make sense?

I just read an article about a boy who became the world's first survivor of a rare brain cancer that was previously deemed unsurvivable. So while these outcomes aren't common, I believe they're worth remembering.

See, I was thinking that too, but it's like… nobody on earth gives a shit about this disease. There are potentially curative treatments in the pipeline for the "big" autoimmune conditions that everyone knows about and then the newest advancement for this one was like twenty years ago. I feel like I have a disease that they just don't care about

 

[SchizoPolyGymnast]

See, I was thinking that too, but it's like… nobody on earth gives a shit about this disease. There are potentially curative treatments in the pipeline for the "big" autoimmune conditions that everyone knows about and then the newest advancement for this one was like twenty years ago. I feel like I have a disease that they just don't care about

What is it, if you don't mind me asking?

 

[zoroark]

What is it, if you don't mind me asking?

Ankylosing Spondylitis, it's an autoimmune condition that, over time, causes the vertebrae in your spine to fuse together as a result of inflammation

 

[SchizoPolyGymnast]

Ankylosing Spondylitis, it's an autoimmune condition that, over time, causes the vertebrae in your spine to fuse together as a result of inflammation

I had a feeling. It looks like several biologic drugs are being developed as we speak and surgery is an option as well. There are a bunch of other treatments listed but those look like the two most promising ones. I don't live with the condition so I can't speak for you, but I would at least follow the story of the biologics.

 

[zoroark]

I had a feeling. It looks like several biologic drugs are being developed as we speak and surgery is an option as well. There are a bunch of other treatments listed but those look like the two most promising ones. I don't live with the condition so I can't speak for you, but I would at least follow the story of the biologics.

I've already failed one of the currently available biologics and am seemingly on the way to failing a second

As for surgery, the only real options involve getting a spinal fusion, which… well, as the name implies is basically just speeding up the process

 

[SchizoPolyGymnast]

That's an impossible situation, and I don't think you're going to find the answer right away. I guess the easy answer, if you want one, is don't do it now. It's never a good idea imo to make a decision like that when we're in an emotional space and venting.

 

[zoroark]

That's an impossible situation, and I don't think you're going to find the answer right away. I guess the easy answer, if you want one, is don't do it now. It's never a good idea imo to make a decision like that when we're in an emotional space and venting.

I told myself earlier this year that if things don't get better by new years I would CTB, and so far things have actually gotten worse. I don't have a method, and maybe that's a blessing in disguise, but I feel like the only thing really stopping me at this point is the fear of an afterlife and possibly going to Hell (I was raised Christian, and I believe in God but at the same time I feel like CTBing would land me in hell :c )

 

[Forever Sleep]

It sounds terrible. I truly don't know how people cope with severe pain everyday. I can completely understand why a person would CTB under those circumstances. Whether you should though- has to be your choice.

Have you exhausted everything you can think of to try and ease the situation? I'm guessing you must have. It actually horrifies me that there are such painful conditions out there that have no adequate cure. I'm so sorry this happened to you.