So I was recently diagnosed with polycythemia and the doctors words were literally "holy fuck! They didn’t tell you this 7 years ago???

I’m having a very hard time right now because people with this condition are expected to only survive 20 years after the diagnoses. Meaning I have less than 15 years to live. I’ll never see my child graduate high school. I’ll never see them get married. I’ll never get to meet my grandchildren… this sucks. I’m so terrified right now. What am I supposed to tell my wife? What am I supposed to tell my parents? I’m going to die before all of them? How did I upset the universe to deserve this? I’m so scared and I don’t know what to do. L

  • j4k3@lemmy.worldEnglish
    0·
    20 days ago
    I have a bit of perspective to add as I have experienced something similar but a bit different. I was disabled by a driver in a SUV while riding a bicycle to work and barely (not hyperbole) survived.

    Morn your loss. It is okay to do so. You just lost a loved one, a part of yourself, but don’t get lost to the point where the despair causes further harm to the person you are in the present. We all must play our best game given the cards we are dealt in life.

    Someone else’s problems do nothing to change your own. However, on the bright side, knowing a diagnosis is a wonderful luxury. It means you can plan, get help, and have your options laid out for you.

    I have spinal problems that are in the rarest part of the back that can be injured. I have no effective diagnosis. There are times when I have weird things happen with my nerves and vision that make me wonder if all the damage I had around my brain stem will one day cause me to die suddenly. I am forced to lay around and watch life pass me by while being a burden to my family and unable to socialize or escape the prison of my limited mobility. I can walk and exercise regularly, but can’t sit up or stand for very long at all; I can’t hold posture without great pain and will fail to collapse if I push through that pain. Still, no one can tell me what is wrong with me or treat it. Who I was 11 years ago died. I’m not the same person I was back then. I experienced something like a missing person; a loved one. It took me a long time to let go and let it sink in that they were never coming back. Without that diagnosis, I have no finality. I don’t get to move on with my life. There is always this tiny string of hope that they can come back one day. Meanwhile, I continue to deteriorate. I can’t get help because a diagnosis is like a death certificate for my former self. On paper, I’m fine. I can barely function and require minor assistance, but I am not allowed to exist or get aid. I am massively sleep deprived from the chronic issues. A human body is a bit weird about lying down so much. I am quite likely to die young from complications, chronic physical stress, or homelessness. A diagnosis, even one that tells me my timeline would be really nice to have. I am left guessing instead.

    All of that said, medicine is nowhere near as advanced as the media would have you believe. All you can do is make the best of the hand you’re dealt, but don’t stop living the best version of yourself and defying the statistics. Averages are just that; there are lots of exceptions.

    The best things that have help me were the ideas: do not worry about anything you cannot change, and ignore anyone that speaks of hedonism in a negative light as a sadistic troll of a human being. Live the best life and take every opportunity. Write your last chapter well and live epically, when you are ready.