College with Chronic Illnesses

Did you know that 60% of Americans have some sort of chronic disease?

What about that at least 20% of youth have a chronic disease, that 500,000 youth with a chronic disease turn 18 each year, or that these individuals are only half as likely to graduate college than their peers?

Illness and disease, from the anthropological perspective, are two different things. Disease is defined as the clinical aspects, while illness is the subjective experience of having that disease in society. Due to this, although many people may have the same or similar diseases, their illnesses can be very different. This is especially apparent in the case of chronic diseases, as the experience of chronic illness can take an immense toll on people through stigma, restrictions on daily activities, and the long term mental health issues that can come with the uncertainty of chronic disease symptoms.

This topic is especially relevant to me because for most of my life, I have been the ‘sick’ kid. We made jokes about me being the sickly Victorian child of the friend group, the one with bad luck who catches every virus that comes my way. I sit outside to enjoy the sun, and end up with my skin blotchy and burning. I do laundry, and one wrong turn causes my knee to crack and swell. And when these things happen, I develop anxiety. Not just normal anxiety about school, but an overwhelming anxiety that I am slowly marching towards death, towards being bed-ridden, towards a hospital stay. When I can’t breathe because the muscles between my ribs are spasming and feel like they’re crushing my lungs, I develop anxiety. When my blood sugar dips low and I can’t stop shaking, I develop anxiety. When my ears start ringing and I get dizzy or can’t hear, I develop anxiety. When I am told that my bowels have fallen against my uterus, I develop anxiety. When my joints grate and pop, swell and ache, I develop anxiety. But when I go to the doctor, what do they see?

A diagnosis of anxiety.

So, I am still undiagnosed. No matter the fainting, muscle pain, difficulty breathing, hearing loss, hypermobility, constant injuries to the connective tissues in my joints and to my insides. No matter the amount of times I go to the doctor and they want to send me to physical therapy before exploring other avenues. If I went to physical therapy for everything they wanted me to go for, I would be there five days a week. But is this unrealistic, I’ve often thought to myself, to think that I deserve a semi-normal life? To think that I deserve a diagnosis, and not having to pay $100 a week for physical therapy that may not even work because no one really knows what is wrong.

No, I don’t think that it is. I don’t think that asking for doctors to understand the difference between disease and illness is too much to ask. For them to take into consideration that with all of their medical education, that maybe, just maybe, the person who lives in their own body knows that something is wrong. That it is not anxiety. That the disease exists within their body, and the constant invalidation from doctors increases the negative experience of the illness. The medical trauma that doctors cause is immense by allowing patients to go home in pain. Patients like myself, who are in so much pain they should be in the emergency room but cannot afford it, so they beg their doctor to listen to them, to overcome their biases and ego and do their job. And so, the healthcare system chugs along, the doctors continue to live their lives and make their salaries. All while I, and many others like me, try to enjoy the college experience with the constant weight of their disease hanging over them. With not only their disease, but also their illness being negated and invalidated, with being told that the subjective experiences of their lives are not real. That because of the stigma surrounding mental health, they will not be taken seriously because the effects of disease in many cases are hardly measurable, and the effects of illness are not at all. And in comes the medical professionals’ favorite word: psychosomatic. Ah, yes! Please, blame me for my body slowly falling apart, I am sure that is much easier than taking a moment to consider that you might not know what is going on. But, no, it is okay, I will continue to suffer because it is all in my head, right?

Advertisement

Look out for your friends with chronic diseases. College is an uncertain time, and the added weight of medical issues can be a heavy burden to carry. Every person deserves a doctor, family, and friends who believe them, validate their feelings and experiences, and support them as best they can. Take the time to educate yourself on how to support someone close to you, and be aware of the many impacts that being in college with a chronic disease can have on people’s daily lives.