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Beneath the surface: Living with an invisible illness

I awoke suddenly, overwhelmingly aware of the paralyzing stiffness that had overtaken my body. It felt as though one subtle movement would break a bone. My stomach was in knots and shooting pains rushed down my body as I attempted to get ready for the day. I tried to dismiss the pains for two weeks before I realized that I must come to terms with them and at least try to figure out why I felt this way.

Every day a new pain would arise making me more aware of my body than I had ever wanted to be. My days were soon filled with trying to find the equilibrium between doctors trying to understand my symptoms and school. I would spend hours after school seeing a different specialist only to be redirected somewhere else when they ran out of ideas. My blood tests would always return to me showing no signs of illness eventually causing doctors, and soon myself, to doubt the veracity of my symptoms.

“You have rheumatoid arthritis and fibromyalgia,” she said with such certainty. Six months I had waited for a diagnosis, an answer, a remedy, yet now that I had it I felt no relief. Instead, I could only feel myself choking on my words as I attempted to muster up the courage to ask, “What now?”.

“Rheumatoid arthritis is a chronic disease that causes the joints to inflame, this why your fingers often get stiff and you are unable to write. It’s also why your knees are stiff in the morning. The cold weather is only going to make it worse, so you need to be moving constantly,” the doctor said. “I can write you a note to give to your teachers, so you can walk around during class and use your laptop to take notes. Fibromyalgia causes chronic pain and tenderness in muscles, but the inflammation in fibromyalgia is undetectable in most cases. I’m going to send a couple of prescriptions to your pharmacy that should ease the pain and have you come back in two months for an update.”

My heart sank deeper into my stomach with every word she spoke. She made it sound so simple; yet, I couldn’t digest her words.

Just as I had begun to adjust to the diagnosis and find a regime that mostly worked, I found myself bed-ridden at the start of my senior year of high school. My curtains were in a constant state of closure as my eyes couldn’t tolerate any form of light, my ears were sensitive to noise, I had lost my appetite and a gripping pain had taken over my head. Initially, I had assumed that the fibromyalgia could affect the muscles and tissues in your head, but when my anti-inflammatory medication failed me, I found myself back at square one: the doctor’s office. Surprisingly, the diagnosis this time didn’t take nearly as long. I had chronic migraines. Short and simple, he handed me a prescription and a referral to a neurologist. I felt like I had just broken some sort of record – three chronic illness diagnoses in two years, none of which offered a cure, only “temporary relief,” whatever that meant.

As I followed the regime set by my doctors to find as much relief as possible, an impending fear rose in me. I feared for the next time my knees would stop moving or my eyes would become so sensitive to light from the migraines that sunglasses wouldn’t cut it anymore. I was scared that the people in my life would begin to question the legitimacy of my pain and think that I was making excuses to avoid responsibility.

The issue with chronic illnesses that are also “invisible” is that there are no visible symptoms, no official treatments, no cure and sometimes no words to describe the pain. The most doctors can do is prescribe a variety of medication to help “manage the pain.” The most a person can see upon meeting someone with a chronic illness is the dark circles and bags from the inevitable fatigue associated with most chronic illnesses.

"But you look fine." These four words have taunted me for the past four years, and no matter how many times I explain it, people have a tough time grasping the concept of invisible illnesses. It’s a difficult thing to grasp and I understand why many people have a hard time believing me. Over the past four years, I’ve created a mold for myself, the one that makes me seem as “normal” as possible, so I understand the strange looks I receive for taking the elevator instead of the stairs on occasion and wearing sunglasses indoors when a migraine was particularly irritating. I’ve since adjusted to the judgmental stares and exchanged glances for doing things that are considered out-of-place for my appearance, but it still hurts to know that people assume what you are and aren’t capable of doing solely based on appearance. By no means do I wish I looked ill but the world does run on first impressions and appearances.

On behalf of people who suffer from a chronic illness, we are trying our best to fit in. We understand that many people won’t believe us and we’re okay with that. But, appearance isn’t everything. There is so much more to a person than what they represent on the outside. To be diagnosed with fibromyalgia, arthritis, multiple sclerosis, migraines and any other form of a chronic illness, is as serious and as hidden as depression, anxiety disorders and other mental illnesses. This is not to compare the two, but just like opening up about mental health, it is often difficult to open up about invisible illnesses. We are truly grateful for the friends and family in our lives for understanding that our pains are real and that sometimes we just need to take out time and rest. We appreciate the efforts made by the people in our lives to help us feel as comfortable as possible in any given environment.



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