Recently, I had yet another stark reminder of how differently people view and react to mental illnesses versus physical ones, especially in medical settings like the emergency room.
Please bear in mind that I am by no means a frequent flyer in the emergency room. The last time I was in the ER was about two years ago when I had a large cyst and tissue growth on my left ovary that had twisted and contorted it, causing severe pain. I was in no way crying wolf or looking for attention. My ER visit resulted in a surgical referral and the removal of that ovary.
One of my family members was a hypochondriac. She had doctors for everything and scheduled appointments with specialists on the drop of a dime. Somewhere along the way in my journey to not become her, I became the polar opposite in that aspect. I avoided doctors and only sought medical treatment as a last resort. I once tried to walk off appendicitis for a few hours as bad stomach cramps. On some level, I know it is irrational and I need to make my health a bigger priority, but I still struggle to go to the doctor unless it is absolutely necessary.
Last week, I had a bit of a scare. I had gotten upset after a spat with my partner and had gone for a walk to calm down and clear my head. Somewhere along the way, though, my head began to hurt and spin. I knew I was upset but the details felt distant and fuzzy, as if the facts were lost in my head somewhere yet I was unable to access them. The harder I tried to root out facts, the more my head spun and the more confused I felt.
While I do struggle often with losing numbers, words or specific facts as a result of my mental illness and have also had memory issues following anxiety attacks and post-traumatic stress disorder (PTSD) flashbacks as well, I have never experienced anything like this before. When I realized I could not even recall my own name, it sent me into a panic. I knew something was seriously wrong so went into the first business I saw and asked the clerk to call 911 for help.
An ambulance arrived to take me to the hospital. Their initial fear was a stroke. They started running multiple tests and sent me for a CT scan. As tests began to come back ruling out the prognosis of a stroke, the demeanor of the staff treating me began to change drastically.
Their next possible prognosis was that it was purely a mental issue or I was lying about the severity of my condition, putting on some sort of act for attention. Despite the fact I was visibly agitated and distressed at being unable to recall even basic facts, their demeanor changed. All of a sudden, they became outright accusatory and began to question whether I was telling the truth. One nurse went so far as to tell me point blank that they would have to start doing uncomfortable and painful tests, including taking my temperature rectally, putting in a catheter for a clean urine sample (though I had given them one in a cup not 20 minutes prior) or even putting a needle in my back to withdraw fluids for tests “unless I had something I wanted to confess”.
As I laid there in a state of panic not because of the possible upcoming uncomfortable tests but rather because my brain just was not working like it should, and I could hear that nurse at the desk nearby laughing with her co-workers about how she was “going to get a rectal thermometer and make me talk,” the results of my CT scan came back.
It turns out I have two meningioma on my brain, tumors between the surface of my brain and the inside of my skull. The larger of the two is in the falx region, in the front of my head, which deals with memory. The smaller of the two is in the middle, presiding predominantly over balance.
Neither was particularly large thankfully, but when housed in the small space between my brain and skull, even smaller tumors could cause issues. Apparently in my already agitated state following the spat with my partner earlier, there must have been just enough pressure put on the memory portion of my brain to cause a temporary memory loss.
The whole demeanor of the staff treating me shifted once again, becoming very serious and somber. They gave me some sedatives and anti-anxiety medication to calm me and slowly the fog began to clear. They began bringing in paperwork and test results for me to bring to my primary doctor to get a referral for a neurologist, stressing the urgency of the situation. Though they informed me that something like 80 percent of meningiomas are benign, even benign tumors continue to grow and could cause temporary or even lasting damage to my brain if left untreated. Ultimately, I’ll need surgery regardless of whether biopsy results conclude the tumors are benign or malignant.
The whole situation made me nauseous, even beyond the fact I have tumors on my brain. Just the fact I was only taken seriously when they feared for a physical condition like a stroke or when the tumors were found on my brain was appalling. As I had mentioned earlier, I have had memory issues related to my mental illness in the past, though thankfully never quite to this extent before. However, following PTSD flashbacks or severe anxiety attacks, my brain is always fuzzy and muddled, as well, and I often have periods of impaired memory afterward. The fact that professionally trained medical staff at an emergency room would treat any condition they believed had a mental origin less seriously, let alone as a joke, is beyond disgusting to me.
I did not make a scene or call them out on their obviously shifting behavior, in part because the very idea I had tumors growing on my brain left me in a state of shock. Even more so, like many others struggling with mental illness, I have sadly become accustomed to my mental health not being taken seriously. However, it is deeply disconcerting to me that emergency personnel at a hospital would be so openly cavalier about anyone’s mental health, treating their patients as a joke.
I walked away from this situation with a few distinct feelings and thoughts in my head. First and foremost, I have a newfound anxiety and wariness about going anywhere alone until this is resolved, particularly when upset. I was lucky I was in an area with easy access to other people and was blessed to have maintained enough reason to know to ask for help. But I carry with me now an ever-present fear that next time I might not be as lucky, especially considering I regularly operate under conditions of extreme anxiety and depression due to my mental illness.
I also am distinctly aware of all the unknowns in my foreseeable future. I am not sure exactly where I go from here. I understand the basics. Get a neurology referral, get an MRI, get a biopsy, have surgery, possibly radiation if needed. But I have no idea of the time frames of anything just yet and probably won’t until tests and biopsies start coming back. I don’t deal well with the unknown. Not being able to plan to any degree heightens my anxiety to dangerous levels.
There is a strange sense of underlying optimism, as well. Somehow I know I will get through this, that I’m a tough cookie. I come from strong stock. Both my parents survived multiple types of cancer and other ailments before they passed. My time is not up yet. I have too much left to do. I have a lot of fight left in me.
However, I am very aware of the fear growing inside me, too. Cancer scares me to the core. I remember going to the hospital day after day when my mother had part of her lung removed due to lung cancer, watching her fade in and out in the CCU, not sure whether she would make it or not. I remember reconnecting with my father just in time to watch cancer wreak havoc on his body, going through repeated cycles of surgeries and chemotherapy. His cancer always seemed to be one step ahead, reappearing again and again in different areas until it eventually killed him. I’ve seen cancer eat away at and kill multiple friends over the years, as well. Cancer is, by far, my biggest fear and it is now on my doorstep.
More than anything, though, I came away from this with a harsh reminder of the stigma that still surrounds mental illness, even in medical facilities. When they believed my issue was a mental one, I was a joke they saw fit to threaten with unneeded, uncomfortable and painful tests as a way to get me to “come around,” expecting my condition to magically cure itself and disappear under threats of unpleasantness. It took finding tumors on my brain, something they could physically see, for my condition to finally be taken seriously.
This piece originally appeared on Unlovable.
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