CW: Sexual Assault
A little over a year ago I realized I needed to change my life. I had been living and bumbling around New York City for nearly a decade and was finally receiving some great career opportunities and a sense that my life was coming together. This “sense,” of course, was something I was just trying desperately to convince myself of. The fact is, I was constantly getting sick and was consistently in a huge amount of pain. Which wasn’t new to me. I’ve been in physical pain since I was, at least, eleven or twelve years old and just coped with it because it was my “normal.”
Jump back to June 2016. I’ve been to an allergist, ENT, had a CT scan of my sinuses, given so much blood to labs for testing I might as well have been at a blood drive, and I’m sitting in my PCP’s office as she’s going over results. I know exactly what those results say before she opens her mouth. I’ve been in this scenario over and over and over again in the course of my 29 years on this earth. The verdict: I’m healthy. Or, as the lab results put it, “unremarkable.” Oof. (My whole body is one giant flaming knot and the medical establishment has to then go ahead and bruise my ego too? That’s low). Given that all the labs came back fine but I was still in so much pain and had so little energy, my doctor diagnosed me with fibromyalgia.
What is fibromyalgia, you ask? In a nutshell: no one f*cking knows. Is it an autoimmune disease? Maybe. Are there genetic components that would make a person more likely to develop it? Perhaps…? What are the best ways to treat it?? *Shrug*. Essentially, it’s a diagnosis that doctors of the western persuasion give to people who they just don’t really know what to do with and don’t really have the growth mindset to figure out. *Side note: fibromyalgia has been strongly linked to trauma, which does make sense in my particular case, and I will come back to this later. So, one of the ways in which I began to make changes to my life in order to heal was making more time to travel.
It started off small, taking the Amtrak to visit friends in Vermont in August, heading out West to visit family in Washington, California, and Arizona in September, hopping on a quick flight to Montreal for my birthday in November. It felt so good to get away. I was all of a sudden having new experiences while also spending time with people I care about. Every time I left it felt like the “refresh” button was being pushed on my life. I began to feel like I was living my life instead of watching it pass me by and I began to be excited about the future even though I was still hazy about what it looked like. One thing that I knew for certain was that I needed to put myself first in ways that I had never been able to before (i.e. not feeling bad about having needs and getting them met). Which, let’s be honest, can be truly terrifying in and of itself. On top of that, I still needed to contend with many American medical institutions. If you don’t know anything about the healthcare system in America, here’s the Cliffs Notes synopsis: It’s a shit show and everyone is screwed except for super wealthy people. Fun!
I literally didn’t go to the doctor, any doctor, for years because it can be such a nightmare and it overwhelmed me to the point of defeat. I didn’t see the point in fighting if I was never going to get the help I needed so I continued to ignore all the messages my body gave me because that’s what I knew how to do. The difference between late-twenties Katie and early-twenties and child Katie though, is that late-twenties Katie knows that she is worth fighting for and deserves better. She deserves better treatment, she deserves respect, she deserves getting what she needs come hell or high water. I (thank you third person, your services are no longer needed) am only one person and, chronic illness or not, need help and shouldn’t be shamed or ignored for asking for it.
Here’s what I know about traveling with chronic conditions. When traveling, medical issues don’t just go on vacation from you. And it’s imperative that you have a doctor you trust to communicate with you if something happens while you’re away. This was not the case for me. On the aforementioned trip in September, I was just coming out of severe withdrawal from a drug my doctor (who is no longer my doctor) had put me on to treat the fibro, which my insurance (which is no longer my insurance) decided to, out of the blue, no longer cover. Not even the amount to wean me off (it was some serious shit). It was one of the most frightening experiences of my life. So frightening that I was afraid to go to sleep in case I died. Not a trip that I was planning or am planning to take any time soon. By the time I got to Washington most of my withdrawal symptoms had gone. Except on the second day there. My right leg seized up and I was unable to walk for the rest of my stay in Seattle with my brother and his wife. Oh and I was in an excruciating amount of pain. So, what did I do? I called my doctor. For three. Straight. Days. I left so many messages that one time I got a recorded voice saying that the health clinic’s mailbox was full.
Thank goddess I was with family and that they didn’t mind pushing me around in a wheelchair or switching around plans so I would be in the least amount of discomfort before heading to California. Thankfully, by that time the pain had let up and of course that’s when my doctor #nolongermydoctor decided to call, chastise me for not going to an ER (FYI: unless I am bleeding out of all of my orifices I refuse to enter those rings of hell and that’s a whole other article in itself), and ultimately offer nothing useful in trying to help me in case it happened again. This should have been my first big tip-off that I needed to find another doctor. Instead, I convinced myself it was a fluke until she and her office pulled similar shit with me right before I was leaving on a two-month trip that would take me from New York to Hawaii, New Zealand, Australia, back across the United States to The Bahamas, then finally back to New York. Once again, thank goddess for my uncle who is a retired doctor and was able to call in my medications for me the night before I was leaving and with a half an hour before the pharmacy closed.
For people who have chronic illnesses, or any illness that requires medication and who plan to travel, one thing to find out about from your insurance company is a “vacation waiver.” Because I was traveling extensively for the first time and out of the country, I needed to have extra refills of my prescriptions so I didn’t run out and burst into flames (*not necessarily a side-effect of stopping medications early, but you never know). I was surprised and relieved that my insurance actually offered a waiver specifically for that purpose. So make sure to give your company a call and find out what the waiver is, how long it’s effective for and how many times a year you’re able to access it. This was probably one of the only times where my insurance was actually helpful.
So, what have we learned so far? Living with chronic illness means needing to be on top of every medical issue to make sure that it helps you live your life rather than keep you stuck and in pain. It is no easy task. Some medical professionals will not help you. On the flip side, vacation waivers! Besides keeping in order all of the things meant to keep a person with chronic illness functioning, there is still needing to deal with symptoms. Chronic illness is exactly what it sounds like. Chronic, consistent, every moment of every day. Some days are better than others. People can also be happy and chronically ill at the same time. Around the time that I was diagnosed with fibromyalgia I was also diagnosed with PTSD (told ya I’d get back to trauma!). It is very common for people who have been diagnosed with fibro to also have a history of and are survivors of trauma including sexual assault/abuse, which is the case for me. It’s kind of a chicken and egg conundrum which is also why treating fibromyalgia is so difficult. Not only do scientific and medical institutions know very little about our nervous systems, they also can’t treat the things that can trigger us.
I could be anywhere in the world and if my brain senses anything resembling my traumatic experiences, my nervous system goes haywire and I’m stuck in our very primal fight, flight, or freeze mode. And it did happen. Here are examples of the most extreme experiences from my New Zealand/Australia trip. One time was walking around in Melbourne with my mom. I felt so overwhelmed from the moment we got there and once that feeling set in it did not go away. Even eating didn’t help. My body felt like it was on fire, I had no patience for anything, I didn’t feel safe, I just needed to get back to my room and my stuff as soon as possible. The other time we were heading to Dunedin, New Zealand. The night before we got there, I woke up super early in the morning because I started having flashbacks of my assault. I don’t know what triggered them, it just sucked and it took me forever to get back to sleep. When I woke up to get ready for the day I realized I couldn’t move. My hips felt like they were locked and it was extremely painful to do a few things. Things like: lie down, sit, modify my position to get from lying down to sitting, standing, and any movement in general.
Being a person with chronic illness who also wants to function in society and explore the world is really hard. You can’t leave your disease in your desk at work to take care of when you get back. You can’t leave your symptoms with the cat-sitter. You can’t even put your baggage in your baggage to whip out just in case you have a day where you’re not doing anything. It’s just going to be your travel companion no matter what, and it will pop up when it gets the message to. The way society is set up does not make it easy for those of us living with chronic illnesses and even the most well-intentioned people don’t understand or know what we really need. That also doesn't mean that you're going to ruin any travel experience because you have particular needs that you need to put first. At this point, my healing journey is tied into all of the other journeys I’ve taken and will continue to take. Right now my takeaway is learning to accept myself no matter where I am and what I’m feeling. And have better doctors because ain’t nobody got time for that bullshit.
Katie Louchheim is a wide-eyed wanderer who takes a lot of pics of where she goes and is not opposed to a shameless plug! Follow @ktjlouch on Instagram for awesome travel pics, blurbs about living with chronic illness and more.