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Coming to Grips With Chronic Illness

My name is Maddy Wester and I am a freshman at Boston College. I write for The Gavel, am a part of the mock trial team, and am a member of the Emerging Leadership Program. I have an affinity for crosswords, an obsession with Candy Crush, and a weakness for show tunes. I am highly motivated and, I like to think, high-achieving.

I am also chronically ill.

I have a condition known as POTS: Postural Orthostatic Tachycardic Syndrome. While I am many things outside of my illness, my illness is undeniably a large part of who I am. When explaining POTS, I always tell people that my autonomic nervous system—the system in your body that controls things you don’t think about such as goosebumps, digestion, heart rate, blood pressure, sweating, etc.—doesn’t function properly and has an incredibly hard time with these seemingly simple tasks.

POTS patients are often told their bodies are “allergic to gravity.” This means that when I stand up, my blood pools in my legs and doesn’t reach the other parts of my body like it needs to. As a result, my heart has to work extra quickly to keep blood flowing to other organs. Just moving from a position of sitting to standing, my heart rate often goes up 50 beats per minute and sends my body into overdrive. Because less blood is reaching my brain and other organs in my body I experience intense fatigue, constantly battle nausea, and have debilitating headaches and brain fog. There is never a moment where I am not aware of my illness or the handicaps it places on my body.

Having a chronic illness is an isolating and scary thing. Because of this, it is important that I, and others struggling with some form of chronic illness, realize we are not alone in experiencing daily symptoms. According to a recent study by WebMD, seven percent of college-aged people suffer from a chronic illness such as heart disease, strokes, arthritis, or diabetes, just to name a few. It is very likely that this number is higher as chronic illnesses can often be hard to attribute a diagnosis to.

So, if roughly ten percent of the students on our campus are suffering from one of these debilitating—often invisible—illnesses, how can we as a student body better support this population?

  • Most importantly, believe people and listen. People who struggle with the very real symptoms of chronic illnesses are often dismissed by both peers and health care professionals. It is difficult to battle an all-consuming illness while looking perfectly fine on the outside. People know their own symptoms and limits best. Believe people, listen to them, and try to empathize. This will go further than you can imagine.
  • Give people the benefit of the doubt. When it comes to group projects and meeting up late to work on essays, there are many times people with chronic illnesses may have to call in sick. They are not trying to flake or force other people do all the work, they just need to take care of their body. Everyone has different bandwidths and each individual is the only one who can assess his or her own. 
  • #2 applies to going out too. Going to formals, football games, and parties is exhausting. Bailing on plans means nothing about the person I am canceling on. Again, everyone has different bandwidths. As much as I would love to be a part of everything, movie nights and falling asleep by 12 is what I need nine times out of ten. Others with chronic illnesses may be determined to go out and not let their disease dictate their social schedule. Neither is better or worse. Everyone is different.
  • People with chronic illness often experience a waxing and waning of symptoms. Some days they may go to all their classes and be very high functioning. Other days they may stay in bed till 5 p.m. and not accomplish anything. This is very common. Because of this, be understanding when someone tells you they are having a flare up and need to fly under the radar for the time being. This is a very legitimate excuse.
  • Lastly, ENCOURAGE. Unfortunately, being sick isn't a week or month long battle for people who are chronically ill. It is a long road that is scary and exhausting. I speak for myself, and I think others as well, when I say I need encouragement every step of the way.

Chronic illness is a daunting predicament, regardless of one’s specific diagnosis or manifestations. For me personally, I have a treatment plan, but I have no cure. I have a list of things I need to do and follow, but I do not have a day set in stone where all of this will be over, nor do I know what the future will hold. Many people struggle with this type of uncertainty.

While my illness is a large part of who I am, I will not let it define me, as others who struggle with chronic illnesses similarly don't allow it to define them. I am a highly motivated, high-achieving 18-year-old. While my illness tries to hold me back, I see it as just another obstacle I have to overcome.

*Chronic illnesses and pain of any kind are deeply troubling, and it can often feel as if you are facing it alone. Over the past two-and-a-half years of being sick, I have encountered the roughest moments of my life physically and emotionally. I have been blessed to receive expert help and am lucky to have such a huge support system. If anyone struggling with this issue needs help, please contact Health Services, the Office of Disability, or Counseling Services. Appearances can be deceiving, and as tough as it is to admit, we all need an extra hand.

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