Going off to college, for anyone, is never an easy transition. Add in a rare skin condition that requires extra time, attention, and often, an explanation, and it can produce a whole new level of stress. Over the years members have shared advice, tips and real-life college experiences and today we’re sharing the best-of-the-best “college survival” how-to’s. Remember, this guide is compiled of thoughts from those affected with ichthyosis whom have been in this very same “college bound” situation. The goal is to help ensure that affected individuals have the most successful first-time-on-their-own adventure as possible!
1. Discuss Needs With Housing People
Ichthyosis requires needs that may not apply to the average student. Make sure you discuss these with the people in charge of the housing facilities. Maybe some dorms do not have air conditioning – you’ll have to request that you be placed in one that does to avoid heatstroke on hot days. Maybe only certain size refrigerators are allowed in the dorms – you’ll have to request that you have one that is slightly larger than regulated size to keep enough ice packs in the freezer should you need them to cool down. Provide them with a doctor’s note regarding your condition, well before moving into the dorm so that they can prepare ahead.
2. Inform People
Most people do not know what ichthyosis is, be patient with them and explain it. Being up front with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues. You may even give them a brochure they can look through and understand that it is a genetic condition. Especially make sure you let your roommate know up front what some of the side effects might be: (e.g. skin shedding, can’t sweat, eyes don’t close all the way, etc.).
3. Be Yourself
You really don’t have to be a people pleaser. In fact, trying to make everyone your best friend, can be a really big waste of energy. Don’t try to impress anyone, just be yourself. Your friends will find you.
And once they do…surround yourself with people who genuinely care about you. College is so much different than high school…don’t feel that you need to be friends with the same people all year. Many college students have a completely different set of friends from freshman to sophomore year. Eventually you’ll find your group and more than likely they will be your closest friends throughout the rest of your life.
5. Rudeness vs. Ignorance
Although it may feel hurtful, most people don’t mean to be rude when they ask about your skin…they are just ignorant and don’t know how to approach the topic. Most times they are curious and instead of simply asking they try to come up with a sarcastic joke about it to break the ice. Don’t be rude back, educate them. You’ll be surprised at how quickly perceptions can change.
6. Clean Up After Yourself
Each form of ichthyosis will require a different type of upkeep. For example, you might have to sweep the floor a lot due to your skin shedding.
Ichthyosis or no ichthyosis, almost everyone’s biggest fear about going away to college is meeting their roommate. How will I live with a total stranger?! Please know that is a VERY common fear…even in those without skin disorders. Don’t expect the worst and don’t expect to become best friends. Just be yourself, educate them about your skin and learn to live together. If you have the opportunity to meet them or speak with them before moving in with them, that would be the best time to let them know. Who knows? You might end up with the best friend you’ve ever had in your life!
8. Get Involved
Don’t be a hermit held up in your dorm room. Get out and get involved in activities. Make friends. Take part in something you love doing. Find time for your passions. If it’s football, play with some friends. If it’s acting, audition for the musical. If it’s singing, join a choir. If it’s volunteering, find a worthy cause and lend a hand. Take electives that will bring you joy. These types of things will keep your stress level down and help you get the most out of your time in college.
9. Time Management
Be sure to give yourself enough time to prepare for class and any special campus activities. Many people with ichthyosis require additional preparation time to care for their skin condition and to plan for the day ahead. Rushing through your routine, or getting caught without your “supplies,” can add extra, unnecessary stress.
10. Don’t Procrastinate or Get Lazy
Get involved but don’t make college all about a social life. You are still there to learn, to grow, to be challenged. It’s all about a healthy balance between the two. Take a reasonable amount of classes. Stay on top of your classwork. Study hard. Never give up, even if some classes are challenging.
11. Get Sleep
This might seem like an odd piece of advice but you’ll learn quickly why this is on the list. There will always be schoolwork to do. There will always be friends to hang out with. There will always be fun things to do or see. However, sleep is critically important to your overall well being, and your attitude toward life. Make sure you get a decent amount of sleep each night to have enough energy to face an often busy next day. Also, learn the value of naps!
12. Heat Stroke
Make sure your R.A. (Resident Assistant) and roommate know about heat stroke and its signs and symptoms if your ichthyosis prohibits you from sweating. It’s just helpful for them to know should you start overheating or get a fever.
13. Exercise and Eat Right
Sure you’ll probably be walking around a lot to classes and have plenty of options for food. But you don’t need to eat pizza every day and after a while your body will get used to walking those routes every day. Exercising and eating right are important things to keep off that “Freshman 15.” Keep your mind active and alert for class, and keep your health the best it can be. A healthy and energized body may actually be your best tool for a happy, productive college experience.
14. Home Sweet Home
Call home as much as you need. Everyone goes through homesickness at some point. It’s natural. It’s all you’ve known your whole life so far. Stay in touch. Go home to visit on breaks. Keep lots of pictures around to remind you of your support system. They love you and are cheering you on. It’s hard on them, too!
For the most part, you’re going to be like an ordinary college student. You’ll have the same fears and the same opportunities. Don’t let your skin disorder hold you back. There have been countless people (with ichthyosis) before you who have gone to college and graduated at the top of their class and gained some of the best friends they could have ever asked for. You’ll have ups and you’ll have your downs, but you have a team of people behind you who are cheering you on…they are called HOME.
Read the “real-college-life” experience from FIRST member Greg LiCalzi:
Greg LiCalzi with college roommate
When entering Union College for my freshman year in 2000, I was scared of the fact that I would be sharing a room with a complete stranger. I avoided sharing rooms with strangers my entire life, forgoing sleep away camps and other fun things that would require me to shower and cream up in front of people. I didn’t know how people would react. Would I forever be known as the guy with the weird skin who uses all these different type of lotions? I found out quickly that all my fears were nothing but fears. I told my roommate, Scott, that I had lamellar ichthyosis, a rare skin disorder, which forced me to “lube” up after every shower. He had a few questions but went right back to unpacking his stuff. I became comfortable living with Scott and opened up more about my disorder to friends on my floor. Ultimately, I lived in a fraternity house with 25 other guys who all knew what I had and always made me feel comfortable. What we sometimes don’t realize is that everybody has issues.
Being upfront with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues. I even had floor mates come to me asking my advice on different types of lotions because I had such a vast collection.