Sharing about your Hydrocephalus with College Roommates and Friends – When is the Right Time?

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Madeleine, Hydrocephalus Association Teens Take Charge bloggerBy Madeleine Darowiche, Teens Take Charge Advisory Council

Bringing up the topic of your hydrocephalus when you’re in college can be tricky, for sure. Or do you even  tell people at all? That’s the thing about college. It is entirely up to you. You can bring it up if you want to, but you don’t really have to if you aren’t comfortable with it. I elected to tell just a few people. Now, you are probably thinking, “Well, how and when do I tell people or what do I say?” I cannot speak for everyone, but here is how I did it. I hope the two stories that follow about my experience will help you be more at ease if and when the time comes for you to tell people about your hydrocephalus.

Although I arrived at school in the summer, I did not tell anyone about my hydrocephalus during the summer session. It ended up, however, that the first person I did tell was one of my summer roommates.  I had three roommates, and she was the one I became closest to during the summer session. In the fall, we found out that we had a class together, so we studied together and hung out. The topic came up because I needed someone to pick me up from the airport after I got back from a weekend trip home for the HA South Florida WALK, because I do not have a car on campus. She does. By then, I figured she had probably learned a little about hydrocephalus, since I had posted some things about it on my Facebook page and she had “liked” those posts.  So I proceeded to explain how I would be going home but needed a ride back to campus. By this time, I felt comfortable enough to explain to her what hydrocephalus is and what it entails. Basically, I said that hydrocephalus is excess cerebral spinal fluid within the brain, and that I have a device called a shunt to treat the condition. I told her how brain surgery is the only way to treat it, and that sometimes the shunt can stop working. I mentioned how, when that happens, more brain surgery is required, and that I’ve had seven surgeries, but some people undergo many more. Lastly, I told her about a few of the issues I have because of hydrocephalus that affect my daily life. I was very happy with the way things turned out. She does not treat me differently since finding out, and that’s exactly how it should be. She had never heard of it before, which I expected, but she was still ready to listen and learn about it.

The second group of people I told was my roommates for the fall semester. I knew we would be filling out a roommate contract, because we did one in the summer, so I decided that would be the best time to talk to them about it.  When the time came to fill out the contract, I waited until after we had filled it out completely and we were just sitting and talking. I brought it up casually, explaining that there was something I needed to tell them. With them, I had pretty much the same conversation that I’d had with my friend from the summer. I also told them the signs of a shunt malfunction, just in case. I’m pretty positive that going into failure is unlikely, given the fact that my current shunt is going on nine years, but I also wanted to play it safe. They too, were considerate and respectful while I was explaining everything.

One of the key things, I think, is to remain casual and not make a big deal about hydrocephalus when telling people about it. Remember, you have it, it does not, and never will, have you. If you don’t make a huge deal out of sharing this information, chances are other people won’t either. And if they still act like it’s a big deal and don’t respond very positively, you don’t need them in your life. Trust me, you will find most people are accepting and empathetic. And I know it may not seem like it now, but you will know when it is the right time to tell someone. Just share as much as you are comfortable sharing and try not to stress yourself out over the whole thing, That will just make things worse for you. It really is not that bad to have the conversation. Take it from me. You can do it. Just be yourself, and I hope that it all falls into place!

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