Painsomnia—it’s not an actual medical term, but anyone in the chronic pain community knows exactly what you’re talking about.
Saturday was my headiversary. Three years ago, on October 13th, 2015, I had brain surgery to remove a tumor.
“How much pain for how long is OK before it’s acceptable to just give up?”
Ever since finding the website the Mighty, I’ve had so many more instances of acceptance when it comes to my chronic pain. When you’re diagnosed so young—20-years old is pretty young for a life-long condition in my book—it’s easy to feel so alone. Unknowingly, you start to isolate yourself from friends and family and start to feel like no one else could ever understand how you feel.
The other day I came across an article on the Mighty titled: “18 Taboo Topics About Chronic Illness You’re Not the Only One Having.” It felt as if the dark and gloomy sky had opened up and the sun starting shining down on me. I was finally being heard. Here are some of my favorite topics that come directly from the Mighty community:
“I actually look forward to procedures that require anesthesia because I get to go right to sleep. That’s so sad to me.”
“[I worry] nobody will love me because I’m sick.”
“I think about how much I dread going to the doctor. I hope I have enough symptoms to have them believe me and take me seriously. But I don’t want enough symptoms and hurt going on to warrant a crash. It’s complicated.”
“I think pretty regularly that I’m a burden to everyone around me, and that if only I wasn’t sick. I have been known to think I would be better not being here, not that I want to die, just that my life isn’t exactly worth it because I don’t really do anything. I’m ‘failing.’”
“My taboo thoughts have always been that I hope my tests come back showing something. More clues as to what is going on or why it is happening. Most of my test results come back normal or just ever so slightly off. Nothing is ever off the charts or crazy enough to get the attention I feel I need.
“Any drug that makes me sleepy or slightly ‘stoned’ I love.”
“I feel frustrated every single day. Because the person I am now can’t even do 10 percent of the things I could do before I was sick. I’m constantly irritated and grouchy due to frustration.”
I no longer felt so alone. I’ve had some version of these thoughts ever since I’ve been sick. These aren’t things I can talk about with other people, especially people who have no idea what you’re going through. And to the outside world, I have a wonderful middle-class life filled with a supportive family, successful friends, and financial stability. But if you take the time to look closer, you would see that those successful friends don’t have time for you and that financial stability comes from your parents because you’re unable to work and provide for yourself. We try to put up a front, but on the inside our thoughts are dark and lonely. Knowing there are people out there that share your thoughts—share your pain—the world doesn’t feel so alone anymore.
I didn’t get much out of my trip to the Mayo Clinic in December of 2017. I was there to be evaluated for everything. Having been sick for so long, we were at a point where we would do just about anything to narrow down a diagnosis. I had one of the most elaborate and detailed neuro and general exams, tons of tests, and they took nine vials of my blood! Eight days in Rochester, Minnesota (in the snow!) and all I really learned was that my brain tumor hadn’t grown any bigger and that I was lactose intolerant.
My chronic pain consumes my entire life. It’s absolutely exhausting. I can’t control how I’m going to feel each day. The amount of times I’ve had to cancel plans or bail on my friends and family because the pain is so excruciating it hurts to breathe.
The more I read about mental illness, the more I understand about my own mental health. Whether its through memoirs or fiction, I’m learning that I’m not alone. I always thought that I didn’t become depressed until I started to have chronic pain. I contributed the two to one another; I have depression because of my pain, there is a direct correlation between the two. I can’t be the person I want to be because I’m limited by my illness. This causes me to be depressed. However, I’m coming to realize that I was showing some signs during childhood that weren’t exactly healthy or normal.
It’s Fibromyalgia Awareness Day! I was diagnosed six years ago when I was still in college. Fibromyalgia impacts my entire life: physically, emotionally, and mentally.
There is no cure. It only gets harder. All we have is to raise awareness and to get people to understand and listen. No I’m not “lazy,” or “faking it.” Just because we don’t look sick on the outside doesn’t mean we aren’t a complete mess on the inside.