Book

This isn't an advertisement or anything, more like trying to get some opinions. Please be kind... this is the first time I've ever talked about this.

I had really refractory UC that brought me to the brink of death 3-4 times, and I was able to get myself better through various methods. Last year I was about to enter palliative care, and now I am not only in remission, but thriving. I've been meeting a lot of patients over the past year at the support groups, and everyone tells me that I should write a book to not only tell what happened to me but also how I got myself better.

My issue is, when I was really sick, the last thing I wanted to do was read someone's book. I was into reading quick snippets of info and maybe some in depth scientific studies, but I never read a full on book. A lot of the websites with various health practitioners selling their books kind of turned me off. It felt like a huge marketing gimmick. The other thing is that it seems like a lot of people out there who got better have written their own books, so it's not really that special.

I don't think I have the holy grail for UC, but my case is unusual and the things that worked were also kind of obscure. Even some doctors have been interested in my story. I feel a strong inclination to share this with people, but I also don't want to be "one of those people" who writes a book and has a website about it and comes across as an infomercial.

So I'm curious... what do you think about this idea? Is a book worth it? Or some other format? I don't want to waste people's time but I also want them to understand the full scope of what has happened. One thing I've noticed in the IBD community is that a lot of people who get better end up disappearing, so we never hear how they did it.

Thanks for reading!

Write the book! I’d be interested however for me I’d be more likely to read a blog rather than actually purchase a book. I always like to read success stories.

I second that. Please summarize in a post what helped you.


Thank you

Oligodar said...
I second that. Please summarize in a post what helped you.

Ditto....

We are all different, and our treatments are usually a journey of self discovery. Since you case was "unusual and the things that worked were also kind of obscure", how much would they apply to others? The last thing many want to do in a serious flair is search for, buy and read a book IMO.

Post what ya got here, Mark.

I don’t think I would buy a book either. I more look to my peers in places like this for ideas, so sharing here is likely to touch more lives that the time, effort, and expense of writing a book. Best of luck with whatever you decide.

It doesn't seem practical to write a book, both because of the resources it would require and also because of lack of readership. I myself don't read books on UC. There is just too much information out there that I get content overload. Not to mention there are daily discoveries. It would be hard to write a book that could stand the test of time and also capture the attention span of readers.

I realize I haven't posted what worked for me. The reason is that the story is long and convoluted, and in order to understand the methods behind what I did, you have to understand my story. The two are linked. I can't just post a list of remedies and say go take them. They all need lengthy explanations. A big problem in the UC community I'm noticing is that when people look up alternative methods, they don't have any protocol planned. They try one thing according to labels and if it doesn't do anything then they conclude it just doesn't work and move on to the next thing. Meanwhile a lot of products have very specific therapeutic windows that I don't think even a lot of alternative practitioners know about, so they can be giving bad advice about truly useful things.

Write it!
Who knows? it might be the seedling for research or further exploration.

I am of the mindset of- if you write it, they will come. Even one person may find relief through your experience. Some of the things on these boards that had been the least discussed have helped me the most. As long as you don’t hate writing- ha! I say go for it.