“Shut up about your health problems”

My father has said, on a number of occasions over the years,

“Shut up about your health problems, Teddy, people don’t care. Just shut up.”

This may seem like a very cold statement–it kind of is–

But it was said from one sufferer to the next.

As I reflect back on my life over the last ten years, I understand better now why my father use to say that all the time–

Because we look so healthy, it’s simply impossible for people to understand how sick we really are, how much we suffer.

So when we talk about our health problems, and the person looks at us and we look so healthy,

they just can’t process it–

Then it becomes a character slam: We’re not sick, we’re lazy/manipulative/con/selfish/self absorbed,

did I say manipulative?

That’s why my father did what he did for a living, because he could do it at home, resting in pain, but his voice was clear and distinct and his mind was clear.

I’m in a *very* fortunate position, that I’m on this Ig treatment, so as much as my health is rough it’s been better over the last year. I’m not sure what this means for my long term future (if I have one), but in the short term I don’t need to be hospitalized as much, and I’m not having as many crashes (in fact, I’ve had none since I started this treatment regularly). There is hope.

I don’t know why this suddenly just came to me,

but I get it now.

I understand, Paw.

I have to stop talking about my health with people. I just have to. I’m going to have to resurrect myself as a writer.

Writers, by nature, spend a lot of time alone at home. That’s all part of the job. It would make sense to people that I spend an enormous amount of time home alone, because I’m typing away.

My father and I share a lot of unspoken communication–he knows, and I know, what we go through.

(And because he doesn’t like to talk about it very much, if it wasn’t for his brother, my uncle Bobby, I wouldn’t have gotten this far. And my father knew that when he put me in touch with Bobby, that’s why he did it. He knew Bobby would discuss things with me he would rather not discuss.)

I get it. I get it now Paw.

Talking about my health problems with people does nothing good for me. It just alienates me from potential friends and acquaintances. Just deal with it in silence, talk about it with the very few select doctors that I trust.

Overall, just keep my mouth shut.

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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