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by DoreenMichele 3083 days ago
It is a nice thought, but, no, no one wants to hear about my journey with my disease. I blog about it for three reasons:

1. Trying to keep my sanity in the face of being unable to talk about it anywhere else while the world tells me I imagined the entire thing.

2. It serves as a useful record for me to look back on and help me with some things.

3. One individual with my condition whose number was up tracked me down after I disappeared off all CF lists. They didn't want to die and were willing to take a gamble on "a crazy lady" on the internet. They have gotten stronger instead of dying. I feel a personal sense of obligation to this individual.

But it might make more sense to remove that blog from my Patreon profile and keep a lower profile on that particular blog. Other than the positive experience of being contacted by this one person, talking about getting myself healthier is nothing but drama and heartache for me. People are routinely dismissive, attacking and ugly.

I continue to have a hard time letting go of the idea that what I know could help other people with dreadful health issues. But the reality is that it is mostly downside for me to give a damn about the welfare of others. It routinely bites me in the butt. It never seems to in any way come back to me in a positive way.

I need to quit being someone who cares and become someone who makes an adequate income. Caring about others has helped keep me destitute. It just makes me a chump.

1 comments

no one wants to hear about my journey with my disease

May I ask why you believe this? I checked Amazon, and found a few books written by people with CF. They aren't best sellers, but all of the ones I've looked at have sold at least some copies, based on the reviews. Your own story would be different, and uniquely interesting.

I realize, as I'm sure you do, that one can't pursue every possible avenue when trying to generate an income; there's only so much time in the day. So maybe writing an ebook about your experience is not the most promising thing to do, in your mind. Then it's a judgment call to decide where to put your efforts.

People are routinely dismissive, attacking and ugly

For this reason, if it were me, I'd keep that content separate and anonymous (I would have done this from the beginning, because I know how these things go). But that doesn't mean you shouldn't write it.

FWIW, earning an income is not necessarily in line with self-promotion. The vast majority of people who support themselves do so in relative obscurity.

TLDR of a much longer, more bitter and angry reply:

I think no one wants to hear because of 17 years of being shit on for trying to talk about it.

My story is not just that I have a form of CF. It is that I am getting well. People straight up tell me I am deluded, I suffer Munchhausen Syndrome, etc.

The degree of ugliness I have been met with is pretty extreme. So I don't really want to tell my story at this point. I am mostly well. I want to get a "normal" life. That was the entire point.