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On the rare occurrence that I leave my house, if you happen to see me out and about, I would blend in with the crowd.
I would have no wheelchair, no physical ailments, and certainly no signs showing my health conditions. I would appear from the outside to be an average young woman. But as the old saying goes, you can’t judge a book by its cover.
An invisible illness and chronic conditions lie within me. I wake up every day in pain. Yes, every day. I have fibromyalgia, and what I once thought was painful is nothing compared to what I experience now with this diagnosis. The pain often radiates or pulsates through my body, throbbing with each beat of my heart. It’s the worst kind of orchestra you could possibly experience.
The pain never goes away either—it just differs in intensity throughout the day. On a good day, I can eat an edible, stretch my body, work out, and soak in the hot tub. On a bad day, I can barely move, and even the slightest touch can feel like a burning, excruciating stab. On a good day, I can smile through the pain and joke instead of cry, but that’s something a healthy person will never experience.
The worrying of whether the day will hold pain and agony or if you will be able to power through and make the most of your time is never something a healthy person wakes up thinking about. When something happens every day, we often grow used to it.
That sadly seems to be the case for many people in my life. Just because I’m never feeling well doesn’t mean I get used to it. The thing that I will never grow accustomed to is the way people treat me. I have far too often been told that “it’s all in my head” or I’m faking it for attention. I’ve been turned away by doctors, I’ve lost friends, and even had family members questioning me. I have had to prove how sick I am to people by showing them my worst self. I am far too often forced to show people the parts of me I am ashamed of in order to gain some empathy and understanding.
The older I get, the more I realize that none of this is normal. An average person doesn’t have to deal with being doubted when they say they are sick. An average person doesn’t lose loved ones simply because of their health. An average person does not have to break down in tears, shake, and vomit for someone to believe they aren’t feeling well.
This realization didn’t happen suddenly. I wish I could say one day I woke up and was just tired of trying to make people believe me and so, I stopped. But that’s not how it happened. It took me many, many years to realize that I was giving some people so much more than I was getting from them. It didn’t make sense to me anymore to keep trying to explain to people that I was chronically ill. I thought those two words explained themselves. And I thought if I were to just add that I’m legally disabled that people would think to themselves, “Wow, she’s only 29 and she is sick enough for the government to recognize she can’t work, so, she must be pretty sick.”
When the judge granted my disability at my hearing, I remember crying. Partly because I was grieving the loss of the life I knew I’d never live. I dreamed of so many things and made so many plans, but that life I saw for myself would never be my reality. Accompanied with the words of the judge’s approval was the marking of the end of my life as I knew it. Things would never be the same for me and that was sad.
Though, I also cried due to pure relief. It felt like the weight of the world had been lifted off my shoulders. I felt believed for the first time in many years. I felt validated, and to think someone held in such high regard—a judge—determined my conditions to be too extreme to work at any job made me feel heard. I also felt moving forward in life would get easier. Though I knew I didn’t have the word disabled tattooed on my forehead, I knew I could confidently say that I was disabled and people would finally understand how sick I was.
That thought was short-lived, sadly, because I learned that “disabled” is just a word. People don’t understand what they cannot see or feel for themselves. It didn’t matter the battle I had fought to earn my title as disabled. It didn’t matter that an expert searched to find a job I could perform at and failed to do so. It didn’t make people understand any better. Often, people just assumed I was happy that I didn’t have to work—which wasn’t the case.
I didn’t go to school for four years and get my bachelor’s degree in psychology and pay all that money in hopes that I wouldn’t have to work. I wanted to work. I enjoyed the field I chose, and I started off as a social worker for The Department of Child Safety right after graduating. I looked forward to going back to school for my master’s to one day be a psychologist. I wanted to help people. I wanted to work.
Looking back now, I realize my motivation for wanting to help others probably stems back to the many years it took me to find the right people willing to help me figure out my health issues. It was difficult as a teenager trying to understand how a doctor could basically call me a liar or refuse to treat me further because they couldn’t find an explanation.
It was hard for me to realize I was not the problem. The problem was just too difficult for them to solve. And rather than admitting that as a doctor they did not know, they would tell my parents that I was most likely seeking attention. Little did they know about the real pain I was feeling or the real tears I cried to my parents. These doctors were not in our home and did not have to take care of a child who was clearly sick in the eyes of my parents.
I was blessed to have a family who loved and believed me. Though it wasn’t hard for them to believe because they had to live with me being sick and the days that were difficult. There were countless times I’d have to be picked up from school because I could not make it through the day. Though my teachers often assumed I was faking it to get out of class, my parents knew better and I maintained a place on the honor roll, nonetheless.
The strange tests I had done and the astonishing amount of them made me feel like a lab rat. Over the years, I would be poked by more needles than I could have ever imagined. I was sent through strange machines and I had vials upon vials of blood withdrawn—and only passed out twice. I would drink horrible concoctions or, worse, have them injected into my body to later be tested. I was exposed to more radiation than I imagine is generally recommended. I have tried so many different medications I could basically be a pharmacist. And with medications, of course, come side effects which I am no stranger to. I’ve had multiple surgeries—one of which was unnecessary, while three were reconstructive due to one poor excuse of an orthopedic surgeon who did a number on my elbow.
I couldn’t account for the number of doctors I have seen or the number of times I was told by a doctor that they, word for word, “could not help me.” One, in particular, told me my condition was too extreme for them to treat and I needed to find an expert. I was told by multiple orthopedic surgeons that they would not remove the hardware protruding from my elbow and bulging out my skin because they were afraid of a lawsuit.
A past cardiologist did not believe that I was unable to run without vomiting, and despite my being adamant about it, he insisted on a treadmill stress test. I was unable to clearly advocate for myself at the time so, unfortunately, I went through with the test and, as expected, threw up all over the treadmill, myself, and luckily managed to get some in the trash. It was not only embarrassing and gross, but I felt like sh*t the entire day afterward—and did not even get my heart rate up to the number that was needed to get results.
There have been two doctors who knew what my neurological condition Visual Snow Syndrome was. One of whom diagnosed me with it. Prior to that, I was diagnosed first with exertion migraines and floaters. Then, I was rediagnosed with nerve damage in my eyes from cluster migraines. Then, I was rediagnosed with chronic migraine aura with vestibular migraines. And finally, I reached my final diagnosis of Visual Snow Syndrome with chronic migraines from Mayo Clinic in 2017. Quite the long journey for two out of my 10 plus diagnoses. So, as you can imagine, the others were just as exhausting, if not more, to reach an official diagnosis.
I’ve struggled over the years to cope with my conditions and to advocate for myself. The way I was treated prior to being diagnosed was not acceptable, and it was not my fault. I was just a child when I began this journey, and it shaped the way I view authority figures.
I no longer trust people the way I used to, and I often withhold how I’m truly feeling because I was always made to feel that my feelings were invalid. My brain is wired to think that no doctor will believe me and that now stops me from seeking out future treatments.
It’s a vicious cycle of seeing doctors, being dismissed, and falling into a helpless depression. Then, when I gain the courage, I again try another doctor, and more often than not, the cycle repeats. I fear I will never reach a place where I feel I fit in with this world. Not because of my health but because I fear no one will ever truly understand what I’ve gone through and still have yet to face.