Constantly Depending on Others as a College Student With EDS

As a full-time, non-third year college student living away from home, most people assume I live a wonderfully free, independent life in the city. But the reality is I do not. I live in one of my university’s residence halls in an apartment, but I do not live with my roommate as any other student would.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I do have a roommate, but she is my brother’s girlfriend, and my brother lives right across the hall. This was a strategic placement by the resident director in my building. If it wasn’t for that seemingly small decision, I could have never made it through my second year of college. There are some days when I am fine, yes. But there are more days when I am too exhausted and in too much pain to do any of the regular daily tasks that most 19-year-olds are able to do themselves. I need help with every meal and I often need help to get ready for bed. I cannot go into the city on my own, in case something happens that requires someone who has at least heard of Ehlers-Danlos syndrome.

I live a seemingly independent life on the outside. I do all of my studying, my internship, my various side projects and extracurriculars. But this is all purely internal. Obviously, it requires some level of activity (writing, typing, etc.), but I can do all of those things without needing to reach down to the floor to untie my shoes or balance a sharp knife in my trembling hands, or even to open the ever-important medications that will help me to maintain the life I lead.

College life is exhausting and hectic, but it is easy for me. I live in a building with an elevator and I am able to use my laptop for nearly everything. I am in a climate controlled apartment sitting on the flat surface of the city streets, which I can walk with relative ease. This all reduces the absolute dependency I live with. Each decision my brother or his girlfriend makes affects me somehow – this is something I must live with each and every day.

And now, I am one day into my summer break, and while the semester is mentally demanding, breaks are physically demanding. My childhood home sits on the top of a mountain as an “outside temperature is the inside temperature”-type environment with stairs to get to the kitchen, stairs to get to the bathroom, stairs to get to the car, stairs to get to my bedroom. A place where I am happy to be spending time with family, but a place that is incredibly taxing on someone whose knees and ankles give way with the slightest misstep, a person who is heat-intolerant and who lives with hypoglycemia.

When I come home I am relieved to spend time with my mom, but for me, college life is much much easier.

At home, I rely upon my mom to retrieve things for me so I can avoid a few trips down the stairs. I need help to do everything. I do not get as much rest in the day so I become exhausted by the end. At home, I must go to work with my mom each day to avoid stairs and oppressive heat. I cannot drive and thus, I cannot be left at home alone for more than a few minutes in case something happens while everyone else is tough to contact while at work. I get looks from students and coworkers, questioning my presence as though this is an odd way to spend my break. I feel like I live a life that places a burden on others, which seems to intensify with every change of scenery.

And yes, it is a strange way to spend my break, but it is the better way. This way, I can function. I must find some form of relief from the strain of leaving “city-life.”