College and Cystic Fibrosis: Who/ What/ When/ How/ Why to Tell People about your CF

I came across some amazing news recently – nearly half of all CF patients are older than 18.

Courtesy of the Cystic Fibrosis Foundation https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

Courtesy of the Cystic Fibrosis Foundation

That means the patient population is growing up!! How amazing is that? It means so many things, and for some of us, it means:

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No matter where you are in your self-identity journey, it’s never easy to know when to “come out” with your CF. And now that you’re going to college, you wonder, who do I tell? Who should I tell? Who do I need to tell? Who needs to know, really? It’s nobody’s business, right?

Well, there are some really good reasons to disclose your CF. Trust me on these. I spent many years getting that degree, while wading through several surgeries, my first and second (ever) 2-week tune-ups (my friends visited me at the hospital!), and and “home IVs” (in front of my sorority!), emergencies (kidney stone!), a few embarrassing ambulance rides from campus (don’t ask!), and financial issues. So I have some experience doing this.

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In my opinion, when starting out, mention it only on a need-to-know basis. But there’s a catch – even if they might not need to know such information on day 1 of orientation, there are people who will need to know it at some point.

Do you do treatments for several hours a day? Do you ever get sick enough to miss class or work? Or days, or weeks, at a time? Do you ever go into the hospital? Do you sometimes need Oxygen, or have to take the elevator because your lungs can’t handle even one flight of stairs, even when well?

Then you would absolutely benefit from letting people at college know you have CF!

Here’s a list of people/departments with whom you should sit down – and have a blunt discussion about CF in general, YOUR CF, and what you might need them to know.

theapplication

There are only two areas where I think one might mention CF before being accepted:

  • As part of “Census” information. If there’s a question like “are you disabled”, somewhere around the same place they ask your race, religion, etc., it’s likely for the sake of simple data collection. Universities like to advertise their diversity, such as “we have students from 28 different countries” or “Seven percent of our graduates did so despite living with a chronic illness or disability”. Otherwise, don’t put it down. There is no benefit or need to know.OR
  • The topic of your college essay includes something related to your Cystic Fibrosis. Admissions Counselors love to read stories beyond what they can gleam from high school transcripts or entrance exam scores. So if having CF has somehow contributed to your biggest accomplishment, the ability to overcome failure or adversity, or a moment or event that changed your life, by all means, write about that!
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Once you’re accepted and decide to go to a specific school, after you send in that deposit check and sign that dotted line, it’s time to start figuring out who might need to know that you have CF.

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Sometime over the summer, the Housing department will mail you a Roommate questionnaire to best match you with someone with similar lifestyles (night owl vs early riser) and interests (listens to music while studying vs. needing silence).

Some people with CF find it easier to live in a “single” (a room for one person), and that’s okay!

  • You may feel self-conscious and not want others to see you doing your treatments.
  • You may worry that your Vest causes too much noise and vibration, or that your cough will keep your roommate awake (this has happened to me before).
  • You might have ongoing belly issues that embarrass you.
  • You also likely have a stash of medications and medical supplies that you don’t want people touching, or worse, stealing.

There is a decent chance that you could end up with a roommate who isn’t bothered by any of it, but remember that most schools allow you to change roommates (at certain intervals). Remember, this is your home for the next semester/year/next four years, and they WANT you to feel comfortable!

RA

Within the first day or two, try to have a private meeting with your RA (and maybe the RD/Resident Director of the dorm) and talk about your CF, how it manifests (for example, maybe you get really sick a few times a year, or perhaps you only get sick once in a while and it doesn’t affect much). Either way, let them know:

  • You have machines for therapy that make noise: The Vest, nebulizers, etc.
  • Your nebulizer makes mist, but A. it doesn’t affect others, and B. it may be mistaken for smoke, but it will not set off smoke alarms.
  • You will have medications in your room, and sometimes even IV medications – make sure that you always have valid prescriptions!
  • An idea of your basic current health profile – i.e. how often/severely you get sick, if you sometimes go into the hospital or do home IVs, treatments (for things like hypoglycemia), and most importantly – what does and does not constitute an emergency for you.

roommate

This one is about communication and respect. If your roommate was epileptic, you’d want to know, right? You’d want to know what they might need if something happens, what to do and what not to do.

Basically, tell them what they need to know.
  • You have CF. Explain CF in brief terms. Tell him/her how it affects you – “I just have to do this treatment” or “I sometimes go into hospital” or “I have to eat a lot”. That type of stuff.
  • You might cough a lot, but you are not CONTAGIOUS!!
  • You have noisy machines that you have to use several times a day. This is an area in which you might have to compromise – remember that you both live in the room and have the same rights and responsibilities.
  • Your nebulizer mist isn’t going to hurt them, won’t set off the fire alarm, and that it should not be used for any other purposes. If you need to ask me to explain that, please message me privately, or ask a friend. 
  • Ask that if  they get sick and are obviously suffering from some catchy bug like the flu, to please take precautions such as hand-washing, make sure that one of you wears a mask when both are in the room, and perhaps have one of you temporarily spend a few nights in a friend’s room.
  • You aren’t going to die suddenly in your dorm room. Tell them what IS and what is NOT an emergency.

You’ll meet all sorts of people in college – that’s probably the best lesson you’ll learn – meeting people from every sort of lifestyle, with different beliefs, interests,
histories, and plans imaginable.

I had a roommate whose parents contacted the school in anger because they were not notified that I had CF before the semester began, and that it wasn’t fair for her daughter to have to carry that responsibility. She was so upset that she got “stuck” with me. It didn’t end well, to say the least.

But…you may also end up with an AMAZING roommate/roommates/friends who don’t see you any differently because you are sick, who sit up with you all night when you’re up sick, who attend your classes for you/take notes/hand in your papers when you can’t make it to class….who take random, spontaneous road trips with you and don’t mind that they have to stop whatever you’re doing to take a puff of your inhaler or stop laughing for 5 minutes so you can catch your breath, then make you start laughing all over again…who visit you in the hospital and keep you such great spirits that the nurses let them stay “as long as they want” as long as they stay (relatively) quiet…

campushealthcenter

Typically, the health center on campus is like the Cliff’s Notes version of a walk-in-clinic. They may not know much about CF, but they can become a great liaison between you and your doctors when you can’t get back home for a clinic visit. Sometimes, you might need a blood test or x-ray or something relatively simple – your campus doc can arrange for it to be done there, or somewhere local and accessible to you off-campus, then make sure the info gets back to your doctor. They can also provide basic medical exams to report to your doctor should you need to start more intensive treatment, saving you time that would otherwise be spent trying to get back home/to your clinic, waiting for specific information, and then implementing a treatment plan.

deanofstudents

This is usually the place where you register as a Disabled Student. Before getting your feathers fluffed, think about things this way: Accommodations for disabled/sick people are simply providing opportunities to level the playing field. Just as someone in a wheelchair needs an accommodation of a ramp to enter a building, someone with CF – with the proclivity for severe respiratory infections and complex belly issues – may need extra time, space, and other accommodations to get things done.

You may not need help in every area, or even many of the areas, but isn’t it a good idea to have these safeguards in place, for those times when your health starts taking over and doing sh-t that you need help treating?

Here are some examples:

  • Absences. Let him/her know that you are sometimes sick/on IVs/in the hospital, which means that you will likely miss classes. Some days, you may feel too sick to attend. Other times, if you’re on IVs, you might not be able to reschedule every dose around your current class schedule – but once you’re done in 2-3 weeks, you’ll be back on schedule. And obviously, if you’re in the hospital, you’re out for a while.
  • When you miss class due to illness, you may need help catching up, miss project deadlines, or have to take a test while feeling really symptomatic (which always affects your end result!).Once, I had been sick for weeks and had a lingering cough that would not respond to anything. Not only was it disruptive to others in my class, but during an exam I had to get out of my chair every 5 minutes to cough and drink some water. So the Dean set up a space for me to take my exam in the conference room next to his secretary’s office, where she’d act as proctor. I had 3 hours to take the test (I would have only had 50 minutes otherwise), was allowed to use the private bathroom in the office, and keep a bottle of water with me to sip.
  • Can help arrange “Incomplete” status as a grade, if you’ve missed a lot of class and need time to finish your work/papers/etc, during the following break. One semester, I had two hospitalizations that put me severely behind. However, I had done most of the work required for the class and did NOT want to lose the progress I had made – I just needed a little more time to finish my last papers and prepare for the exam. I worked through the upcoming break, came back a day early to take an exam, and completed those courses.
  • Can arrange for campus safety to drive you to class from your dorm, if you are sick and cannot walk that far. After minor knee surgery, and again after a few separate hospitalizations, I needed a lot more time (and energy) to walk to class. During these times, the Dean arranged for Campus Safety to drive me from place to place on campus until I was strong enough to do it myself.
  • Allow you to take fewer classes to be considered “Full time”. Some semesters, I could only take 12 credits without it becoming medically overwhelming, so I was still considered “Full time” so that I can take advantage of living on campus, using campus medical center, eating in cafeteria, etc.

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Every student is assigned an Advisor – a professor in your school of study (and sometimes in your major), who will help you plan out the next 4-5 years. They help you balance course loads, tell you when to take certain classes, what prerequisite classes you will need to take first, and how to navigate your major at your University. For some students, Advisors are simply a line item that you check off each semester. For others, they provide invaluable guidance through the course of your degree.

professor

At the beginning of each semester, let them know the basics – that you have a chronic illness, might have absences, may need some accommodations. You are not asking for special treatment, just some help to level the playing field, as others do not have the same issues you do. Some things that they may be able to arrange for you:
  • Allow you to take breaks for coughing, etc. – allow you to take water/cough/bathroom breaks (maybe sit in the back of the class to make it less disruptive).
  • Allow you to keep water with you so that you don’t have to leave class if you have a tickle cough (some professors prohibit food or drink in class).
  • Allow (quiet) snacking if you are diabetic/hypoglycemic or have to eat food at certain times/with meds (some professors prohibit food or drink in class).
  • Assistance if you’re sick during exam time – perhaps taking it at a different time so you don’t disrupt others, or during the professor’s office hours, etc.
  • Approval to have a classmate record audio of lectures (some professors require written permission).
  • Accommodation for time deadlines (papers, etc.) if you are sick/up all night/doing IV meds during usual class meet time – perhaps they will let you go to another lecture (if they teach the same class at a different time that day or week) or allow you to hand it in a few hours later when you’re in between treatments or can get someone to drop off your work.
  • ABSENCES!! Many profs have a max # of absences, some as few as 1 (one) allowed for classes that meet once a week. Show that you are committed to your coursework by offering ways you can still get your work done/listening to lectures, etc. (see above examples). Professors hate “problems” but love solutions!
  • HOWEVER, you could end up with an asshole for a professor who thinks that you’re weak and ridiculous and don’t deserve to be in his presence. – yes, one who actually said, “If you’re going to keep carrying on like that, please leave my classroom” – so be prepared to speak up for yourself.

cafeteria

On some campuses, students are not allowed to remove food from the cafeteria.
  • With recommendation from your doctor, the campus health center, and the Dean of Students, the cafeteria may allow you to “Take out” additional food, or offer an extension of your meal plan for additional fees.
  • Cafeterias may also allow a designated roommate/friend use your meal card to purchase food, and take it to your dorm room if you are too sick to go.
My college helped me get through my degree with dignity by providing accommodation to level the playing field when I needed. Not all CF patients may have all of these experiences, but it’s very important to inform the people who need to know. While away at college, the university is responsible for providing a safe, accessible learning environment.

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Despite the best-laid plans and preparations, some people just don’t get it. So don’t try to make someone understand. All you can do is give them the information.

When making new friends, find the right moment(s) to bring up the topic of CF. For some people, it might naturally come up – you have a coughing attack, they walk into your dorm room while you have your Vest on, etc. For others, it might not come up for a while…that’s when you need to consider how close you are, if they are worth sharing this information about yourself.

Above all, take advantage of this amazing time in medical history, when it was rare for a CF patient to live long enough to go to college, let alone be well enough to attend, and have access to new treatments and medications that offer independence from hospitals (home IVs!) and our parents (airway clearance!).

*Remember that these are suggestions based on my personal experiences. Please always follow your doctor’s suggestions, your university’s rules, and any other authority figure/entity that governs you as a student on that campus. Always consult the proper authority and follow the proper channels. 

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