by Anjali Balakrishna
photography courtesy of Emma Simonoff
I don’t look sick; I don’t think I ever have since the beginning of my problems. Sure, I may always look tired, but what student doesn’t? If you were to ask me about the inside, though, that’s a completely different perspective—usually one I don’t talk about at length. I’m selective about whom I tell, what I say, etc.
This article, however, is going to give a pretty good look at what it is like to live with chronic illness in college, at least from my perspective.
At 16, it began with severe muscle and joint pain, amongst other symptoms. Years later, I would learn that this is fibromyalgia. 17 marked the deepening of my depression. 18 would probably represent the crippling anxiety and chronic fatigue that gave me a rough start to college.
Now at almost 21, I am in the process of figuring out if I do indeed have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome, or quaintly referred to as POTS.
In the first major chunk of my life, I have had to learn new things about my mind, body and overall health that not everyone my age deals with. It is a journey filled with confusion and breakdowns, but that doesn’t truly scratch the surface of what a life with chronic illness entails.
Watching others around you in school who appear to have it all together, who accomplish everything on their to do list, who go out and lead an active and social lifestyle—you often wonder what their secret to life is. How is it they are so productive and functional, but I can barely get myself up to go to class or even into the shower? You are plagued by comparisons and feelings of inadequacy.
Besides the internal turmoil, there are numerous other problems created by the people around you. First of all, they may not believe you or they devalue what you go through.
If I say I’m having a bad pain day, I may get an, “Oh yeah, my back hurts too,” or, “I’m sorry. Take an Advil.” This does much more harm than good. What may be a genuine attempt at making the ill friend feel less alone, or trying to give advice, really has the opposite effect; it deepens the misunderstanding and lack of empathy we already feel.
The second problem we chronically ill young folk face is people shutting us down. Yes, sick people may be young, but not all bodies are built on the same timeline or with the same level of functioning.
Telling us to exercise, go out and be social or not to worry too much is not helpful. We may be in what some people call “the best time of your life,” but we are not capable of doing what the general population can. My capacity to stand for long periods of time, to socialize and to just be calm is minimal. I am aware of my limitations.
To add to this, there is a stigma surrounding young people with chronic illness. The measures we need to take to ensure we can be an active participant in our own lives are sometimes misunderstood.
Those with forms of dysautonomia, for example, cannot stand for longer durations of time compared to the average person. If you were to run into me in the hall while I’m waiting for my classes to start, odds are I’ll be sitting on the floor. I am also at a point where I feel it would be beneficial for me to use a cane. It isn’t supposed to be a crutch—pardon the pun—but rather a tool to help me be up and about and supported, especially in situations where my Service Dog in Training cannot accompany me.
Building on the topic of other people, doctors yield their own source of frustration. I know many people my age have been written off as having a panic attack or even making it all up. The age-old phrase, “it’s all in your head,” is still frequently used by medical practitioners to address their patients’ ailments, even in situations where the afflicted are clearly having a problem.
There comes a point with having a chronic illness where you almost mourn yourself. I am no longer as capable as I once was. I look back and see the athlete I was—the health buff and energetic girl. I wonder what happened that got me to this specific place in life. It is often impossible to reconcile the loss of your ability.
The most important thing during this time is self-talk and care. I know I’m not making this up; my struggles are valid. Spoiler alert: most of us with chronic health issues, mental and physical, are not looking for attention.
If anything, we become more empathetic and compassionate as we learn about ourselves. What others do not understand about us is how we understand and identify in others. There is a way to find strength in what would usually be deemed weakness.
October is Dysautonomia Awareness Month. Please check o Dysautonomia International’s website for more information and resources.