When I was diagnosed with Type I or juvenile diabetes at the ripe old age of 30, I wondered what it would have been like to self-administer insulin shots and cope with the disease as a child or teenager. I knew then just how fortunate I was. I did not have to manage a chronic illness while navigating the transition to adulthood, the social and academic landscape, and the temptations of college life. Nevertheless, I am well aware of the unique challenges that a chronic condition presents for a young person dealing with a major life change, away from home for the first time, and facing the responsibility of taking care of oneself.
Last week an NYU student with Crohn’s Disease wrote a wonderful piece for The Choice blog of the New York Times on this very topic: http://thechoice.blogs.nytimes.com/2012/02/13/college-chronic-illness/. The various challenges she has had to confront illustrate that managing a chronic condition in college is not easy. This young woman had not considered her illness when she enrolled at a college far from her home, a decision she now recognizes was probably foolish. For this reason, she decided to share her experience and offer advice for other college age students balancing teen life with a chronic illness. Her five main points are 1) find a doctor either before leaving for school or soon after; 2) keep a complete set of medical records; 3) inform your professors; 4) stay in touch with your parents; and 5) know when it is time to seek help or even go home. I want to piggyback off of her sound recommendations and offer a few points of my own for any student with a chronic illness. 1) You are now an adult; take responsibility for your health; 2) let others know about your health issues and help them understand your illness; 3) seek out support groups beyond just your health professionals; and 4) most importantly, set yourself up for success, not failure.
Most college students have already turned 18 or are about to reach this milestone birthday. This means that under the Health Insurance Portability and Accountability Act, otherwise known as HIPAA, they are recognized as adults with full rights to medical privacy. Along with that comes the responsibility to manage their own health issues. As scary as that may be for parents, we must acknowledge that the time has come for our “adult” children to take primary charge of their care and habits, especially since family members may not be close by. We can offer guidance on their decision making, but they must learn to advocate and make smart choices for themselves.
For most teens with a chronic health issue, the first challenge is accepting that the illness requires constant attention, something that fellow classmates may not fully understand. The late night eating and other college rituals which are probably not healthy for any student can be seriously harmful to someone for whom moderation is a necessity. Yet even for the most outgoing student, sharing something as personal as a chronic illness, especially during the first weeks of college, may feel uncomfortable. The desire to fit in often compels students to take part in all of the activities that their newly acquired friends are doing, whether wise or not. It is easy to slide into a state of denial.
If sharing something as personal as a chronic illness is difficult, here is a helpful reminder to anyone coping with a health issue: you are not your disease. Students need to first separate their personal identity from the illness (I have diabetes; I am not diabetic!). That will hopefully make it easier to share the facts about a medical condition with a few close and trusted friends, and remove the mystery and possible stigma associated with it. Friends will probably have questions: What are the signs that you are in trouble and need assistance? What should we do to help you and under what circumstances? When should we call for help? The better informed they are, the easier it will be to confide in them and seek support when it is most needed.
Knowing the difference between healthy and harmful choices is one thing; having the discipline to always choose wisely, especially for a teenager, is another. A chronic health issue can wear on anyone’s emotions and resolve. With parents not in close proximity, students should seek out support groups on campus. The college health center is a good place to inquire. If there is no established campus group, seize the opportunity to start one. Having the support of schoolmates dealing with similar health challenges can provide encouragement to stay on track and make healthy lifestyle choices. There is a reason support groups exist; most of us can’t do it alone.
I advise anyone with a chronic illness to wear a medical bracelet or necklace, and certainly if there is the risk that at some point emergency medical attention may be required. The bracelet could be a lifesaver, especially if one is in an unfamiliar place without the usual support network. An insulin reaction, for example, might easily be mistaken for drunkenness or drug use. If you end up in an emergency situation, you don’t want your symptoms to be confused for something else. Carrying a card in one’s wallet is fine, but thanks to HIPAA, searching through a purse or wallet is off limits.
College students with chronic illnesses are forced to grow up faster. Taking responsibility and making mature lifestyle decisions come with the territory. How can we assist kids through this maturation process? Help them to see their own strengths and limitations. A student who suspects she is weak in self-discipline needs to assess how to avoid the temptation, and may want to inquire about the types of support facilities in place before choosing a college. More and more college campuses offer substance-free housing. While these dorms are not necessarily for students managing a chronic illness, they offer a smart way to set oneself up for success in maintaining a healthy lifestyle while still taking full advantage of the college experience.
Success in managing a chronic illness is easier when a student has the right support network (professionals, support groups, friends) and feels empowered to make smart decisions which will not compromise his or her health. Like most things related to choosing a college and making good choices, it comes back to right fit. It starts with finding a comfortable college environment where a student feels encouraged to make good choices and put health first.