My mind wakes up with the sun. The beams of sunlight capture the dust in the air and my eyes melt the room into an oil painting as I inhale the fresh air of a new day. I begin to move my toes and fingers, stretching up to my knees and elbows to see how limited I am in movement this morning. I often feel my hips too stiff to move right away so I try to introduce small movements at a time as I try to bring my feet to the floor. I slowly stand and feel the pain escalate from my hips to my knees as I slowly make my way to the bathroom to sit in the burning hot water of my shower. I’ve found this to be the easiest way to wake my body. I can’t explain the science behind the healing effects of water – or perhaps it is just my version of a sugar pill. But, soon after, I can stand up and start to feel my joint awaken and become more limber with movement. Most pain will vanish within an hour, some will linger for weeks, but it’s completely unknown what will be the severity of my symptoms that day.
The issue with having an invisible illness is that while I am all too aware of the severity of my symptoms, there is no physical representation of my pain. When a person breaks there arm or slices their finger on a piece of paper, there is physical evidence of their suffering: we can understand what they are experiencing and offer support and sympathy. But with an invisible illness, we cannot display the severity of our pain except through verbal expression and to someone who has never had a similar experience, claiming that: ‘I’m being electicuted through my body’ is enough to suggest a psychological workup. There is no glaringly obvious physical problem, it is a continuous uphill battle to be heard, and sometimes, even receive proper treatment.
In my second year of university, I began to experience tingling in my fingers and toes. I dismissed it, after all, it was likely just an extended symptom of waking up. The symptoms grew more severe, my body would tense up at every slight movement, I became increasingly dizzy and I felt as if my body was continuously being electrocuted. I was taken to the hospital for emergency examination, and twenty-two hours later, I was sent home with the diagnosis of a migraine. I have experienced migraines in the past, and while I could not recognize this pain as similar, I figured I’d take pain medication and lie down in a dark room, and it would pass.
I returned to the hospital a couple weeks later. I explained that I had been unable to attend school, I couldn’t move without pain, the feeling of electrocution had become so severe that I had resorted to crawling to the bathroom and back to my bed. But, again the doctors dismissed me with a migraine and prescribed me a dose of morphine to aid the pain.
It shocks me how dismissive the doctors were acting and how quickly I could have become addicted to painkillers. I received no tests or procedure to try to diagnose my symptoms, instead, I was continuously told that the symptoms I was experiencing were not consistent with anything they recognized, therefore were impossible and they continuously sent me home.
At this point I was practically living with friends as I required around the clock care: I needed help feeding myself, bathing, and even getting to the bathroom. I was no longer attending classes and failing the majority as I could not obtain enough doctors notes excusing me from class. As time went on, my friends could only visit on rare occasions as they had other obligations and my mental health was quickly deteriorating. I wanted to enjoy the sunshine, I wanted to read my books and attend my courses and enjoy time with my friends but I was retrained in an anatomical prison.
After two months, my symptoms had become so severe that I was practically paralyzed in my bed. My sheets were unwashed, my hair had been permanently placed in a bun on the top of my head and my skin had become so dry and brittle that moving my fingers would be excruciating. I would call my mother crying, trying to comfort myself while trying not worry her too much (because apparently it was just a migraine). But, my voice must have revealed the extent of my suffering because I woke up the next morning to my mother, who had driven the five hours over night, to provide me with emergency care. She helped me to the car, and lay me down on the seat where I immediately burst into tears. I cried most of the way home.
She immediately brought me to our local hospital. As I was in such a terrible state I was unable to advocate for myself, she raged at the doctors and ensured I would not be leaving without a proper diagnosis. They admitted me to the urgent care unit and introduced me to various specialist. I was quickly directed to an MRI where they discovered that I had myelitis. The doctors explained to us that my spinal cord was severely inflamed in my upper spine and neck and that I would require immediate medical intervention. I was place on three days of I.V. Cortisone to reduce the immediate inflammation followed by six month of a high oral dose. I was then continuously followed up by a neurologist as my lupus had begun to affect my neurological system.
I was able to return to school within a week and by some miracle recovered my grades in four of my five courses. Things were ‘normal’ again, I would enjoy time with friends and spend days at the library and was finally able to walk. It’s shocking how many mundane tasks I had not appreciated until my ability to perform them vanished. Simple things like showering feels like the most soothing luxury to me now.
I still experience quite a few neurological symptoms of Lupus, I’ve struggled with sudden vision loss and sudden hearing loss neither of which have been treated to this day. I am continuously receiving the excuse that I am aging and that vision and hearing loss are a typical result of that. Perhaps this is how it feels have passed the age of 20. But, I continue to advocate for myself and I continue to rely on the support of those closest to me to help me through tough phases. I can’t imagine how difficult it must have been for those around me to advocate for nothing but my personal testimony but it very well may have been a blind faith that saved my life.