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There and Back Again. (How I Lost & Found My Sanity)

  • By Sean

    You may have noticed that I’ve been away from this site for a while. That was on purpose. I had to step away for a bit for my own mental health.

    It’s ironic that just last week an article that I wrote for this site about not going down the rabbit hole appeared. Because I TOTALLY went down the rabbit hole. There’s a show on TV I love called Legion. It’s about a powerful super being who may also be crazy. It’s a smart, weird, trippy, messy show that’s certainly not for everyone. And every so often the show will go off on little educational tangents like this one …

    “A delusion,” the segment (narrated by Jon Hamm) says, “starts like any other idea, as an egg, Identical on the outside. Perfectly formed. But it’s what’s inside that matters. An idea alone isn’t enough. We have ideas all the time. Random thoughts and theories. Most die before they can grow. For a delusion to thrive, other more rational ideas must be rejected. Destroyed. Only then can the delusion blossom … into full blown psychosis.”

    I bring this up because I created a delusion. One that, from my reading online, isn’t uncommon for people who suffer from autoimmune disorders like PsA and who have to go on drugs that compromise our immune system. I had all but convinced myself that I had cancer.

    It started with bumps on my neck that I thought were swollen lymph nodes. (Turns out they were not.) That was the egg. The idea. From there other “symptoms” began to crop up. Abdominal pain. Itchy skin. I stopped sleeping. I got quiet. My wife said I looked dead inside. That my “spark” was gone. I thought, “Well sure … that’s because I probably have cancer.” But the real cancer was anxiety.

    I met with a counselor about it and she diagnosed me with what’s called adaptive disorder. It’s different from generalized anxiety disorder because it’s linked to a specific life change. A death in the family. A divorce. Or a big change to one’s health.

    I went from the healthiest person I knew my age, just five years ago, to someone with psoriatic arthritis. And it broke something in me. Not all at once. It took time. It took years. But slowly the part of me that was insecure began to swallow the part of me that felt I was invincible.

    Turns out I was never invincible. But neither am I in poor health. Yes, I do have PsA. But I am fit, I am active, I still work out five days a week. I just went and had my blood work done yesterday and everything is tip top. Everything within normal ranges. And even then the delusion STILL tried to take old. “BUT it’s JUST inside the normal range. That result is ALMOST abnormal. What does that mean?”

    I let my delusion take over. And I lost weeks of my life. It could have been worse. I could have lost years. But while I was lost I had to force myself to stop reading about my disease, and other diseases, and to stop visiting forums like this one, because it was only feeding my delusion.

    We spend so much time focusing on the physical toll PsA exacts that we sometimes ignore the mental toll. Which can, in its own way, be so much worse. PsA is a very real thing we all have to deal with. Borrowing imaginary problems on top of our real ones makes the burden so great that it can break you. It nearly did me.

    I’m okay now. I know I don’t have cancer. My blood work is great. And I don’t need to keep cycling through doctors hoping they’ll find what’s wrong. It’s so easy to convince yourself that SOMETHING is wrong, they just haven’t found it yet, when what is wrong is in your mind. Health anxiety is real. And it can be devastating. It hurt me. It hurt my wife. And I’m glad to be out of the downward spiral I was in.

    I’m looking forward now to simply getting back to living my life. And sleeping again. Last night I slept a full 8 hours for the first time in I don’t know how long. And it was glorious.

    Life is what we make of it. And none of have any guarantees. But I understand, better than I ever have before, the importance of embracing the NOW. Of being in the moment. And not conjuring up additional, imaginary problems.

    PsA is just something I have to deal with. And as my wife likes to say, “Everybody’s got something.” But my life can still be as full and wonderful and bright as it was before my diagnosis. If I let it. If I’m not my own worst enemy.

  • By rose.

    I’m not extremely active on this site or these forums, but thank you for sharing. I needed to hear this. So glad you are doing well and spreading such a positive way of thinking to us. I know I’m not the only one who will benefit from hearing this. Thanks again.

    • By Sean

      Thanks, Rose.

      Sounds like you used to be a former fitness nut like me. It’s SO hard to lose that part of yourself, isn’t it? That’s been one of my biggest struggles. My fitness was like a suit of armor that I wore.

      Which is why, rather than getting caught up in irrational fears, I should be CELEBRATING being fortunate enough to be on Humira. Because it has me back in the gym. I’m lifting twice a week again (in addition to doing the elliptical machine 4 days a week). That’s something I never thought I’d do again. Differently than I used to … no heavy weights anymore … but I AM lifting. And it makes me feel like my old self.

      They always say don’t fear the drug, fear what the inflammation that the drug is controlling was doing to your body. I got caught up in fearing the drug. What’s changed is that I’m no longer doing that. I’m glad I live in a day and age when biologics are available and thankful that I have insurance that’s good enough that I pay just $5 a month for it.