The Grief of Ghosts: Dealing with Invisible Illness as a College Student
I move through life as a ghost, an apparition of my former self. Still me, but less, somehow. Without even realizing it, a part of me died, slowly and gently over years – saying goodbye without me hearing. I grieve for this lost self and I know my family does too: the part of me that was healthy and energetic and full of life. Outwardly, I remain the same – I am still the same passionate, creative, and thoughtful person I was before. But inside my body, underneath the skin, is a battleground where a war is being fought that I can never win.
This is how it can feel as someone who struggles with invisible illnesses. While I don’t feel this way every day, there are harder days where I grieve over the life that I used to have and the life I can never live. Unfortunately, too many people feel like this to varying degrees. While I can only speak about my experience, over 10% of Americans deal with some type of invisible illness. Invisible illnesses are just that: any illness that one cannot see from the outside. This covers a wide range of diagnoses, such as chronic pain, fatigue, mental illnesses, and any other illness that does not present itself outwardly.
As a college student, this has become my harsh reality. College is challenging for most students, regardless of health. However, students like me, the academics of college aren't the only barrier to success. My personal experience as an English student, double majoring in English Literature and Creative Writing, has been anything but easy, and I want to bring awareness to the additional hardship that students struggling with invisible illnesses face.
As of writing this, I currently have diagnosed chronic headaches/migraines and general and social anxiety disorders. I am also currently in the process of being evaluated for ADHD and POTS. For those who don’t know, POTS stands for postural orthostatic tachycardia syndrome, and among a multitude of other symptoms, it mainly concerns a racing heart and occasional fainting upon standing (I have never personally lost consciousness, but I have been close). The symptoms that come with POTS are different for everyone, but mine include headaches, lightheadedness/dizziness, heat intolerance, brain fog, being either too hot or too cold, and fatigue. Many of these are a constant companion to me. I can’t remember the last time I woke up and felt good in the morning.
It is hard to describe to someone else how I experience the world. There are times when I want to do something, let's say an assignment, but I cannot physically make myself do it. It’s like there is some invisible force holding me back from the task. In these moments, my head feels empty and too full at the same time. It feels as though I cannot think, especially about anything related to the task. The harder I try, the more elusive thought becomes. But at the same time, my thoughts are racing about all of the things I need to get done. There are a hundred little voices in my head, all saying different things, all talking over each other in an incoherent chorus. This is a mental battle that I fight every day. This battle, in turn, makes my anxiety worse, which perpetuates this vicious cycle.
In addition to the mental warfare, my body is also constantly reminding me of how fragile bodies can be. Almost every day, my head throbs in pain. I have had headaches as a constant companion for years now, to the point where my expected reality is pain rather than the absence of it. These headaches vary in intensity and location, but even a small one can make doing daily tasks significantly more difficult. Oftentimes, my symptoms combine forces – they rarely act alone – in what feels like a conspiracy against me. Inside my mind, my mental struggles, brain fog, and headaches all work together to make thinking feel like I’m underwater. Sometimes, it feels like I am fully submerged in the sea and the only thing that I can do is sit there with my eyes closed and hope that I can come up for air.
One thing many people fail to realize, including myself at times, is the toll being sick can take on you mentally. There are days when the gravity of my health weighs on me and the grief starts anew. It is a strange thing: mourning for someone who is still alive – mourning for yourself. What makes this grief worse is knowing that others feel it for me too. Perhaps one of the most unexpected emotions that I feel because of my health is guilt. I often feel like a burden to my parents and my friends – those closest to me that see me at my worst. Being sick is oftentimes isolating and lonely, even surrounded by people who show you nothing but love.
Yet another battle that I fight is not with myself, but with the healthcare system. Pursuing a diagnosis is something that also affects my college experience, albeit differently than my symptoms do. It has been almost a year since I started my POTS diagnosis journey, when I finally listened to my body and admitted that what I was feeling was not normal. Despite numerous appointments and tests, I am still without an official diagnosis. I have been dismissed by doctors, and while I can only speculate, I am sure it has to do with my being a seemingly healthy, nineteen-year-old female. This constant battle that I am in, both with my doctors and my own body, has taken a toll on me that I did not anticipate when I started this journey. I feel as though I am in a state of purgatory and this unknown is constantly on my mind. Plans for doctor visits, phone calls, and tests leave little room in my mind for the other things I should be thinking about instead.
While I try to be open about my chronic illnesses, often in an academic setting there isn’t a place for these types of conversations. I think college sometimes takes itself too seriously. Don’t get me wrong, I completely understand the importance and the magnitude of what we do here. However, I don’t think everything is as life and death as it is made out to be. I think the lack of accommodations for many invisible illnesses stems from this fact: that the college culture simply does not allow for them. And without completely dismantling this culture, the chances of accommodations for invisible illnesses are low. In a perfect world, such accommodations would be readily available. As a student, I understand completely why such accommodations don’t exist. I understand how hard it would be to try to accommodate my own illnesses, much less those who suffer differently than I do. However, I don’t think it is impossible. I think that more awareness and empathy from professors and medical providers would be a great start.
I will still grieve for the life I had imagined for myself, one that my body now limits. I look to the future with both wariness and hope. Over the past year, my perception of my future has changed dramatically – but this change is not inherently bad. In my future, there is a version of myself that I don’t yet know – one that I am in the process of becoming. I hope that this version of me grieves less often and knows that I look to her with hope and anticipation. I hope that she is looking back on me now and that she sees how far she has come.
