Anyone have experience living with a long-term potentially life threatening disease? I recently received a diagnosis for something that will be actively monitored but not treated at this point, although eventually I will most likely need treatment. Looking for resources to help wrap my head around this

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Very sorry to hear OP. I think a therapist is a good first step, plus there are likely support groups in your area (now meeting virtually, I assume) for this type of thing. There might be some online forums too, but I would stay away from those for the time being as people only tend to post negative things. Best of luck.

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Hello 👋 I’m sorry about your diagnosis. I have been living with a cardiac issue, diagnosed then I was 20 (now in my late 30s). My issue is *potentially* life threatening, but managed without medication at this point, which I was able to ween off of.

The most awkward part is informing any new office I’m assigned to and validating they 1) have an AED, & 2) someone knows how to use it.

My issue could potentially cause problems when I’m much older, but it’s uncertain. We did worry about what pregnancy & childbirth would do, but that was all fine too.

After the initial shock of the diagnosis & a failed surgery to fix it, I gradually got more used to it because nothing bad has happened. I do the things my doctors asks me to & don’t give it much thought anymore.

I hope you too get to a point where it’s a thing in your orbit, but not one that needs regular attention. I have some muscle memory about the things I cannot do, and it’s like an automatic response now. Take care, OP.

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Thanks ladies. This is still very fresh and will take me some time to process. In a few months I’ll have a better handle on things and perspective on the future. Just taking it day by day for now.

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I am looking into a therapist. And leaning firmly into my hobbies.

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