hide & seek

There’s this greek mythology thing about a girl named Cassandra. She had a gift- the gift to predict the future, namely disasters. However, in some sort of petty heartbreak, a curse was cast upon her. From that point forward, no one would believe any of her predictions. She knew the truth. She was certain. She could shout it from the heavens and no one would hear her. But one day, those premonitions proved to be prophetical and everyone regretted not hearing her out.

Cassandra and I have more than our names in common. Living with invisible illness is sort of like the curse Cassandra had to live with. I look fine, and often, tests come back fine. I’ve been accused of making up my symptoms or being “crazy” so many times that it’s almost expected now. If my family and I don’t fight long and hard for extensive medical research and care, my illnesses wouldn’t only be misunderstood, they’d be undetected, and henceforth, untreated.

I feel like I’ve been gaslit by a lot of the medical community. At times, I doubt myself. I’ve heard the words “it’s all in your head” so frequently that I hear it echoing as I try to fall asleep. No one deserves to feel less than because their illnesses, mental or physical, can’t be seen. I look good. I smile a lot. There are times when I can walk with a skip in my step. But there are times when the opposite occurs. My hair gets matted because it hurts too bad to brush it. When I start falling unconscious, my facial muscles might contort and feel like some unseen hand took my skin in a fist and twisted. And, sometimes my legs fall out from beneath me with no warning, and all I can do is watch the world slip away from beneath me. That makes a person feel voiceless enough as it is. People on the outside of these problems accusing us of being selfish, or fakers, only makes life harder for us.

I just had a very traumatizing hospital experience in which only a solid 2 doctors believed that my symptoms were not, in fact, either made up or psychological. I was treated really poorly and I’m beyond happy to be back home now. I was accused, judged, and mistreated by a team of professionals claiming to want to help me. I felt isolated and helpless. By the time I arrived back home, I was feeling a bit better, and had developed some INDEPENDENT coping mechanisms separate from the painful and damaging advice I received from my former medical team. I was able to fight my way to get to a concert I’ve been looking forward to for months. I got to meet my favorite band, Johnnyswim, and sit front row for the performance.

The point about this is that the concert was the polar opposite of the hospital setting. For a really sick person, you’d expect a concert to be loud, triggering, and maybe even difficult to find accessibility to. But, upon finding out I was feeling unwell and had just left the hospital, an employee at the venue told the band members (Amanda and Abner). The way they hugged me, asked me if I was okay, and were ready to help me was exactly what the hospital lacked. These celebrities who didn’t even know me were more eager to make me feel better in any way they could than my doctors were. It was shocking, and I’m really emotional about it.

Spoonies, sometimes, the people who listen and are willing to be there aren’t the people who are trained to. Each and every one of us will learn that. It hurts and it makes the already difficult task of living with chronic illness that much more grueling. But I discovered tonight that there are people there to listen. Where there are shortcomings with treatment from medical professionals, there are others who will be there instead. They are hard to find, but they exist. I was starting to doubt that fact, but I promise, they’re out there.

As for my medical treatment, we’re expanding our horizons and looking into other hospitals. If the medical mystery that I unwillingly but proudly am is a burden to those supposedly looking to better medicine, then we will find someone who’s willing to teach me and learn from me. I don’t know where those people are hiding, but I know my family and I will find them. I know myself, and I know that there is still hope.

#trauma #hospital #healing #gaslighting #invisibleillness