For three years, life was about survival, imagined and real. My sympathetic nervous system had been on overload for many years, with my body telling my mind and vice-versa: it's not safe. Flee. Because of tumor, I was saturated with adrenaline. I didn't feel right, yet doctors said there wasn't anything significantly wrong. I was a hypochondriac basically. When I found out that indeed I was very sick, not just a "here's some medication, you'll get better," but a "you have a rare disease that could have killed you and you still have to make it through a risky medical procedure to survive," my relationship with my body and with those I had trusted to care for it got complicated. I had learned to deny what was happening inside of me. I had believed in those trained in medicine. That all fell apart.
Because when I was feeling something was very wrong, my body was telling the truth. I wasn't overreacting or anxious. Once I was diagnosed, I had to learn about a disease most of my medical providers knew almost nothing about. Not one of them acknowledged what how hard it was for me to live for years with an undiagnosed illness that caused an almost constant excessive fight or flight response. I had to be hypervigilant about my safety as they treated me because one misstep could have meant my life.
When I feel anxious now, it's very difficult to assess the real level of threat. When I'm under stress, I wonder if it's a recurrence because the symptoms are the same. I get angry when others dismiss my worry about another tumor. If my original symptoms had been ignored much longer, I might be dead right now.
I don't know how to live with this. There's post-traumatic stress thrown into the mix too so I often vacillate between feeling very unsafe in the world and completely shutting down emotionally just so I can function.
I've been dealing with the aftermath of diagnosis and medical procedures for more than two years. Physically there's no evidence of disease. Emotionally, I'm lost. A mess, really. In some ways I feel my soul left my body when I was operated on. I feel alone. There are aspects of any disease you have to deal with on your own, no matter how much support you have, but a rare disease is isolating. I've never met anyone in person diagnosed with the same thing. There's an on line support group for the disease but no IRL community.
It took almost two years from diagnosis to recover. It was 9 years to diagnosis. 11 years of my life where illness played some part. I try not to get angry because I feel in some way that time is lost.
I know logically that time isn't "lost" and I've grown in ways I wouldn't have if I had been healthy, but I don't see it as a "gift" as some who encounter a life altering illness do. It feels like a curse. The more I deny that, the deeper it digs into my cells. I hate the fact I was sick, that no one paid attention to me, that I suffered for years.
I don't like to write what I just wrote. I don't want it to be true. It's not even entirely true. But it's primarily true. And I've tried to minimize it but it doesn't go away. I'm angry. More than a quarter of my life is entangled with this curse. I want to be able to trust my body's innate response to danger. I want to enjoy beauty. I want to see the good in others. I want to acknowledge the miracles of all that works in my body.
That all feels impossible. I know it's not, but deep in my cells, I feel vulnerable. I know this life can end anytime and I no longer have the luxury of ignoring death. I also can't deny how real this all has been. I'm in the middle of it-in medias res. All I am capable of doing is being present and breathing.
