By Becca Atherton
When I was just a few months old, my parents were told that I had only a 13% chance of living to the age of five. High school, Prom, getting my license and graduating high school were experienced my family never thought I’d get to experience – let alone college! But here I am today, twenty-one going to college, majoring in Psychology with a minor in Family/Marriage counseling. While going to college is an amazing experience that so many of us with PH thought we’d never get to have, there are some things about the experience that will be different for us than it would other college students.
The first PH conference I went to, I was just sixteen years old and I sat in on the ‘PH Goes to College’ panel, wanting to get some tips on how to deal with the stress of college and my disease at the same time. The students on that panel had some wonderful advice such as choosing classes later in the day so you’re not waking up super early, get in contact with disability services, e-mail your teachers before you meet them to tell them about yourself and not over-scheduling yourself when it comes to classes and after school activities. The only thing I wished had been different about the panel was their array of colleges. Everyone on that panel chose to go to a four year university – some even lived in dorms!
Seeing all these young adults up there, some going to Berkley and some even going to college out of state – it gave me unrealistic expectations for myself. I felt that if I went to community college that I wouldn’t be doing enough, that I wouldn’t be good enough. If they can go to a four year with PH, why can’t I?
PH and its symptoms are different from person to person. The amount of stress someone’s body can take is going to be different than yours. I had to remind myself that, and tell myself that at least I was going to college because there are some PH patients who can’t even get out of bed. So if you’re sitting there, thinking about going to college but not sure if you can handle the huge campus of a four year, I want you to know that community college is an option and it does not make you any less of a college student if you go.
Some of the best things about community colleges are its smaller campuses; so your classes won’t be too spread apart and the class sizes are smaller so your teacher will actually know you. When you get into a class of 500, the teacher isn’t going to know you or your health, which means, if you miss a day and need notes from that day, they probably won’t even realize you were gone. I was worried about dorm rooms in college. What if my roommates are up too late? Staying up late and not getting enough sleep has a tendency to put me in a tired mess when it comes to my PH. What if my dorm mates got sick? I shouldn’t be around that. Staying at home was the option I chose and I don’t regret it for a minute. So I don’t get the ‘dorm experience’, I can just have my friends sleep over on the weekends if I want that.
One thing I noticed was how much cheaper it was than a four year. Sadly due to medical issues, I had to withdraw from classes last semester. Imagine paying all this money and then not even being able to finish the course? I lost money last semester, but not nearly as much as I could’ve.
Because my health was still a problem by the time this semester rolled around, I am taking this semester off and it kills me. College makes me feel normal. I’d get up in the morning, get dressed and go to classes, hang out after school, come home and do homework. It gave me something to do and it made me feel like I was actually doing something with this life that my parents and I have fought so hard for. Sitting at home all day, not only is it boring but it makes me feel like I’m wasting the precious time that I have. I know that its not my fault and I know that it doesn’t make me some lazy person but I hate it when people ask me how classes are going because I have to answer with, “Oh I’m taking a semester off.” And I worry that I sound like one of those college kids who just got lazy or flunked out so they aren’t going to school this semester. If you are in this situation too, we have to remind ourselves that we are doing the best that we can. The standards for us are going to be a little different and there are going to be times when we have take breaks from college. Yes it means getting our degree later, but at least we are working towards it.
College can be a bit crazy and stressful, but it can also be so much fun. I’ve met a lot of great an amazing people through college and I’ve learned so much. I’ve had amazing experiences and gotten involved in a great club after school. (I did not do more than one club at a time due to stress and activity level). Just take it slow, remember that you don’t have to get everything done at once and that you’re on the right track.
Thank you for posting this! I am a 28 year old female. I was diagnosed in 2004 and I have had a 7 and 5 year old cousin die from the same condition. I am constantly trying to push myself to be like "normal" college students. Giving myself higher expectations and setting myself up for failure. Some days are harder than others. As sad as it sounds, I want to complete something amazing and be be known as the girl who worked hard to achieve her goals. Not as the girl who had PH. This gave me hope, knowing there are others just like me. It's hard to relate to others, when this disease is so rare. Thank you!
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