High School and Cystic Fibrosis

A guide for students prepared by CFWA

Contents

  1. High school and CF
  2. Catching up with school work
  3. Exams
  4. To tell or not to tell others that you have CF
  5. Explaining CF to other people
  6. What do your teachers need to know about CF?
  7. Medication at school
  8. Fitting everything in
  9. Further study
  10. Career planning
  11. Communicating with others who have CF
  12. Useful resources

High school and CF

High school isn’t easy for anyone. High school can be harder for people with CF. Looking after yourself can take more time and effort than for people who don’t have a long term health condition.

You may have less energy than your friends from time to time and less energy means that keeping up with school work, sports and having fun can be tricky.

There will be other students at your high school with a variety of health conditions so you won’t be the only person having to balance daily treatment with school work and being a teenager, but sometimes it might feel like you are the only one.

Just as CF affects you differently from other people who have CF, so can your experience of high school be different. The sections in this website have been developed to provide hints and tips for navigating your way through high school, but bear in mind that some bits might not be relevant to you.

( the information in this section was initially written by Janette Hayward, adult with CF)


Catching up with school work

Everyone gets sick and misses school sometimes. You might miss more school than your friends because of doctor’s appointments, medical tests or maybe even to stay in hospital. Even when you’re at school, you might not feel as well as your friends or have as much energy and time to do all of your school work and extra-curricular activities.

Here are some ideas that might help you stay on top of your work or catch up if you are falling behind.

If you are starting to feel more unwell or tired than usual there are some things you can do which might help you feel better or save a bit of energy:

– Try going to bed earlier or sleeping in longer on the weekend.

– Do quieter activities e.g. watching movies with your friends

-Skip an activity that you usually do until you feel better.

– Start on homework and assignments as soon as you get them and study earlier for exams.

(Taking action early can help you stay well. Homework, assignments and study can be pretty boring. You might be tempted to put off starting them for as long as possible. However, if you tackle your work straight away and get a head start you might be not be as pushed for time or stressed if you get sick before things are due.)

Sometimes you’ll have a lot of work due all at once. When this happens it can be stressful and overwhelming. The amount of work might be too much to handle if you aren’t feeling well, if you’ll be missing school or study time because of your CF treatment or if you get sick suddenly).

-Talk to your teachers early if you are facing difficulties.

(Talk to your teachers as soon as possible if you feel like you have too much work to do. They should be able to find a way to advise you about how to get it all done at your own pace. If your teachers are not listening or helping try talking to your year coordinator or parents).

-Be creative with school attendance.

(If you are feeling unwell and need to miss some school there might be a way to find a good balance between being at school and getting enough rest. Maybe you can have some half days or go to school every second day for a while. These options give you more time for sleep and treatment but you can still go to some classes and see your friends).

-Hospital admissions and school work.

Some people with CF need an admission to hospital during school time. Doing school work in hospital is hard. You might not be feeling well enough, it is noisy and there are lots of distractions. However, if you can, doing school work will help you keep up with your classmates. Your hospital should be able to find a quiet spot for you to work.

Your teachers can give you some work for you to do in hospital if you are feeling up to it. They can also let you know about any new assignments or tests so there are no nasty school work surprises when you go home. If there is a school at the hospital you go to, the teacher there can help you with your own work rather than setting different work for you.

Tips from other young people with CF:

“Use your free periods wisely. You can do your homework to give you more time in the evening to relax. You can do some exercise or have a quick nap if you’re feeling extra tired.” – Andrew, 23 years

“Ask your friends to share their notes with you and to let you know about any assignments or tests that are handed out if you’re away.” – Scott, 19 years

“Talk to your year coordinator about anything that you think might help you. The worst that will happen is that they say no!” – Emily, 21 years

Exams

Exam time is not fun! A lot of hard work and stress goes into getting a mark you’re proud of. CF can make exam day more difficult. There are lots of reasons why CF might interfere with your exam performance. If you’re feeling unwell on the day you might find it difficult to concentrate as well as you normally do. You might be distracted by having medication or food during the exam or you might have an upset stomach because you didn’t get your Creon dose right the day before.

Exams in Year 7 – 11:

In years 7-11, the school can put in some adjustments to ensure you perform to the best of your ability. Reasonable requests, based on typical CF symptoms may include:

  • Giving additional time to complete the exam to make up for the fact you are coughing a lot, or rest breaks to help regain your concentration.
  • An individual room to take away the worry of coughing lots in the big exam hall!
  • An exam room close to toilets or one where you can change the air conditioning.
  • Being able to bring in food, drink and medication into the exam
  • The possibility of doing a make-up exam if you’re away on the exam day.
  • Doing the exam at home or in hospital.

If you think these options would be helpful, talk to your parents and your year coordinator about what they can do to help you. The requests will need to be discussed in advance.

Exams in Year 12:

In Year 12 you can definitely have special exam provisions for your final exams. Extra time, an exam room on your own which is close to the toilets, availability of food, drink and medication, rest breaks plus more are available to you. Remember, Year 12 exams are often as long as 3 hours and you may be sitting 2 in one day! For this reason it’s important to think about how you might cope under these demanding and often stressful conditions.

Applications for special provisions need to be arranged early and you will need specialized medical documentation, so if you want to explore these options talk to your parents and Year Co-ordinator sooner rather than later so you don’t miss out.

If you do decide to apply for special provisions, be sure to keep a copy of any medical documentation you collect as this might be helpful if you want similar provisions later on at TAFE or uni.

You might not want or need any extra help. Just remember that if you are unwell on the day these allowances can help you do your best even when you aren’t feeling your best. You don’t have to use the special provisions but having them available to you IF you need them might be helpful.

Exams in the real world:

“At first I didn’t see the point of organizing special provisions for my Year 12 exams but my parents made me. In the end I was actually really glad. I didn’t use most of them (like toilet breaks or extra time) but it was really good to know I had those options if I needed them.” – Anna, 23 years

“I liked doing my exams in a small room with only a couple of other students. It didn’t seem as full on as in the big hall with hundreds of student.” – Matt, 19 years

“I organized special provisions in Year 12 which were great. I wish I had known I could have asked for these things earlier in high school.” – Tom, 30 years

To tell or not to tell others that you have CF

In high school and beyond you will make new friends and meet new people. It’s up to you whether you tell them that you have CF and when and what you tell them.

Everyone has a different idea about if and when to tell someone they have CF. There is no right or wrong decision. It can be hard to work out what you want to do. There may be positive and negative things about both options.

Below are some things to consider when you’re trying to work out whether or not you will tell others you have CF.

What have you and your parents done in the past?

  • Have your parents usually been open or private about your CF?
  • What do you like about how your parents have handled things?
  • What don’t you like about how your parents have handled things?
  • Have you usually been quite open or private about your CF?
  • Are you happy to keep handling things the same way or would you like a change?

What might happen if you don’t tell?

  • People won’t know you have CF unless you tell them. Your CF can remain private.
  • You won’t have to answer any questions about what it’s like to have CF. Sometimes people ask questions about having CF that might make you uncomfortable or ask you at an embarrassing time. If people don’t know you have CF this won’t happen.
  • If people don’t know you have CF they might ask you questions about why you cough or why you need to have medication at school. It can be hard to answer this question if you don’t want someone to know you have CF.
  • You might not feel like you’re being totally honest with yourself or other people if you don’t tell.
  • People won’t treat you any differently to anyone else, if they don’t know you have CF.

What might happen if you do tell?

  • You might feel like you are being totally honest with yourself and others.
  • Some people might treat you differently if they know you have CF
  • If others know about your CF and you need extra support you have more chance of getting the help you need.
  • Sometimes it’s easier to be open. You don’t have to make up a reason for your cough and medication for example. People will know you cough and need medication because of your CF and it won’t be such a big deal.
  • If you tell people about your CF you can ask them to treat you in ways that are helpful for you. For example, you can say “Because of my CF I cough more than other people but this is normal for me so don’t worry.” or “Because of my CF I sometimes have time off from school. Can you please take notes for me if I’m away?”.
  • If you tell people about your CF you will be able to tell them exactly how it affects you so they don’t have to guess, or find information on the internet which doesn’t apply to you.

Deciding whether to tell people about your CF and when, is something that you will need to do for your whole life. High school is a good time to start working out which choice you feel comfortable with.

To tell or not to tell in the real world:

“I have always told people I have CF if they ask or if the topic comes up naturally in conversation.” – Ben, 39 years

“I only tell people I have CF once I know them well enough and I can trust them.” – Debbie, 27 years

“I only tell my really close friends. No one else needs to know. It’s none of their business.” – Mark, 35 years

“I don’t want people’s sympathy or to be treated any differently so I never tell other people.” – Dave, 43

“I don’t tell people at first but when I spend enough time with them they eventually ask why I cough or why I take tablets and I find it’s easier to tell people rather than make up a cover story.” – Janette, 30 years

“I was always open about my CF though I don’t look like there’s anything wrong with me. There are times when I need people to cut me a little slack as I don’t feel great. Also, there’s the element of having to hide taking pills etc. which I always thought was more hard work.” – Brandon, 38 years

“I don’t tell people as I have found people go weird – distant, less interested or just plain disappear on you. Also I don’t like to be patronised or fussed over. My sister would make it public knowledge and had the complete opposite experience.” – Michael, 26 years

Explaining CF to other people

If you have decided to tell someone you have CF they will probably want you to explain a little bit about what CF is. It’s up to you how you explain CF and how much information you give a person.

If you aren’t quite sure what to say here are few things you can try.

  • Think of 2 or 3 ways that CF affects you, that you can easily explain. For example, having lots of chest infections, needing to do treatment and taking medication every day or needing enzymes to digest your food.
  • Try explaining CF to your brother or sister or your best friend.
  • Ask your parents how they explain what CF is to others.
  • Ask your doctor to explain CF to you in a way that you and your friends can understand.
  • If you have an older sibling or a friend with CF ask them how they explain it.

If people are interested in hearing more, they will ask you questions and you’ll be able to give them more information if you want to. If people aren’t really interested they will probably start talking about something else.

You’ll have lots of opportunities to tell people about CF so you don’t have to get it right first time.
What do your teachers need to know about CF?

It is definitely beneficial to let teachers know about your CF and how it affects you. With more understanding of your needs, teachers are in a better position to help you do your best at school and enjoy your time there.

Some teachers may have taught a student with CF many years ago, so might have an outdated idea of what is now involved and others may not have ever heard of CF before.

There is general information for teachers available here that might be useful for you to have a quick look at or you can ask your teachers to look at. Some of the state Cystic Fibrosis organisations may even be able to organise for an educator to come and visit your school if you wish. Check here to see what your state offers: There is also an online e-learning section that teachers can log on to so they can learn about CF and how it affects a student in high school. …

Because CF affects everyone differently you will need to tell your school and teachers how it affects YOU as an individual and how they can help. The list below includes lots of different topics to get you thinking about which ones apply to you.

  • What organs in your body are affected? Do you have arthritis, Cystic fibrosis related diabetes (CFRD) or osteoporosis? Are there other ways CF affects you like needing to go to the toilet at short notice?
  • Will you need to take medication at school? Would you like to keep all of your medication with you to have as you need? Does any of the medication that you need at school require refrigeration? It makes sense for people with CF to keep their medication with them and you might need to explain why to your school or teachers. In some cases you might need back up so you may need to ask your CF clinic to write a letter to the school or ask your state CF organisation to speak to the school about it too.
  • Letting your school/teachers know about the medications and treatments you power through each day will give them an understanding of how much more you have to fit into every day compared to your friends.
  • Letting them know about clinic visits and potential hospital admissions will help your teachers understand why you are away from school more often and that they need to update you about what was taught and discussed in any lessons you miss. They will also understand that you have a legitimate reason for requesting extensions if you are unwell.
  • Are you well enough to take part in regular PE? Does your PE teacher need to know you have CF and what activities you can or can’t do? If you need Ventolin, Atrovent, salt tablets, extra water or you might need to take time out for a breather they will let you do so and not worry about you. If you do extra-curricular sport you might want to let your coach know too.
  • It would be very useful for the school nurse (if your school has one) to know who you are, what CF is and how they can help you if you feel unwell during the day?
  • Would it be helpful for you to have a locker in a centralised place in the school to save you lots of extra walking back and forth?
  • Do you need/want special consideration and exam provisions? See the sections “Exams” and “Further study” for more info.
  • Do you have times when you don’t get much sleep during the evenings due to coughing, so find it difficult getting to school in the mornings.

You will also need to think about when to educate your school and teachers. Do you want to update everyone at the beginning of each school year when you know who your teachers are? Would you like to talk to all of your teachers as a group or talk to each one individually? Would you prefer to talk with your year co-ordinator one-on-one and then they can pass the info onto all of your teachers? Perhaps you would like your parents to be involved or to take care of the whole thing on you behalf. Maybe you think it’s best to only talk about your CF if you need to when you are feeling unwell or need extra treatment.

There is no right or wrong way to proceed and you can do what feels right for you each year. What’s right for you in Year 7 might not be right for you in Year 12. As you move through the years in high school your approach to this will probably change.

Once you leave school and start studying or working you will need to work out who to tell, what to tell and when to tell without your parents help so getting practice in high school is probably a good idea.

What to tell school and teachers in the real world:

“Right from kindergarten my parents and I always told my teachers I have CF. It was important to us that they knew so they could look after me if they needed to. In high school it was much easier to get extensions for work if I really needed them because my teachers knew I had a good reason. In Year 12 when I was admitted to hospital some of my teachers gave me private catch up lessons when I came back to school which was really helpful for my end of year exams.” – Janette, 30 years

Medication at school

Hopefully your school allows you to have your medication with you. It will be much easier for you to have all your medications handy so you can have them when you need to. If your school doesn’t want you to keep your medication they will need educating about how important it is. If you don’t feel able to talk to your teachers or they don’t listen, your parents or your doctor might have to get involved.

Some people with CF are happy to have medication in front of other people while others are very worried. However you feel is ok.

  • How do you feel about having medication in front of other people?
  • Do your feelings change with the type of medication it is?

Possible worries and possible solutions:

What will others think or say?

Test the waters by having your medication in front of someone you know well and trust first. Their positive reaction might help build your confidence.

Being different and being treated differently.

You are different. There’s no getting around that. The choice you have is whether to see this as a bad thing, a good thing or just a thing.

You have some power over how people treat you. If someone is treating you poorly you can ask them not to. If someone is treating you well you can reinforce that by thanking them or encouraging that response.

It might take a bit of time but eventually people will realise that taking medication is just what you do and they will soon overlook it.

How do I explain what the medication is for?

Take a few minutes to think up a quick explanation for your different medications so that if someone asks you can easily think of what to say. Your explanation can be very simple.

Being the centre of attention.

Some people love being the centre of attention, other people hate it. If you don’t feel comfortable being in the spotlight when you’re taking your medication you can try and distract your audience. Ask another person a question so the group is looking at them or start a new topic of conversation so people become involved in that. Or, you could have your medication when everyone’s attention is naturally focused elsewhere. If you are very worried, maybe you can have your Creon or insulin just before you eat in the bathroom, at your locker or in a classroom.

Can you think of any other ways to get around these worries? Someone you trust like your parents, close friends or teachers might be able to suggest other ways to help you feel more comfortable taking your medication. It’s important to remember that often things turn out much less worse that you fear.

Medication at school in the real world:

“I recall going through a stage where I didn’t want to take my digestive enzymes at school because people would call me a ‘druggo’. I learned the hard way that this is not a smart move, we need our digestive enzymes and there are ways and means of taking this medication without other people knowing; taking it in the bathroom, taking it before you leave your last class before lunch. So much better to take your medication in private than not take it at all.” – Lilly, 42 years
Fitting everything in

It can be challenging to find time to do everything you need to and want to. Treatment, medication and exercise can be really boring and a pain in the butt but it’s very important that you find ways to fit it all in.

Taking care of your health has positive effects. Right now, staying healthy will help you do everything you want to do to the best of your ability. In the future, staying healthy will help you achieve further qualifications if you choose, find a job you enjoy, work as many hours as you’d like to, travel, settle down with a life partner or have children.

Not taking care of yourself can have negative effects. If you don’t look after yourself now you might find it difficult to do everything your friends are able to do. However, sometimes people who don’t commit to their treatment and medication don’t experience any negative effects until months or even years later. In the future, they might find that their health is not as good as what they want it be and that they wish they’d been more proactive when they were younger.

When your parents or doctors nag you it’s tempting to ignore them. After all, they don’t know what it’s like to actually live with CF do they?

Real tips from real people:

  • Get your friends involved in exercise – go for a walk, run, swim, bike ride, roller blade, rock climb, surf, dance, lazer tag …. the possibilities are endless!
  • Time your chest clearance and nebulisers for when you’re watching TV or listening to music so you have some entertainment and incentive. Your parents might even let you watch more TV if you are doing your treatment at the same time!
  • Organise a reward from yourself or parents for doing your treatments and exercise regularly to give you something to work towards.
  • Enroll in a team sport. You’ll exercise at practice and matches. Knowing that others are counting on you to turn up will give you another reason to turn up.
  • Find a type of exercise that you enjoy doing. If you enjoy it, you’ll be more likely to do it.
  • Just Do It. Do anything. Anything is better than nothing.
  • There are lots of different types of chest clearance techniques – chest percussion, PEP, flutter or acapella. If the type you are doing is a real drag ask your physio if there is another type of chest clearance you can try.
  • If you like routine, try and do your treatment and exercise at the same times each day so you have time set aside.

Juggling priorities in the real world:

“There’s a lot to be said for treatment / life balance. Best advice I can give is to incorporate things into your treatment plan that you do enjoy as well as the yuck stuff. And you know when you’re not feeling great so step it up a notch. The only person you’re damaging by not doing treatment is yourself.” – Brendan, 38 years

Further study

Special Entry/Equity schemes and Scholarships

Some universities and TAFE’s offer special entry or equity schemes which can help you get into the course you want. These schemes take into consideration factors such as illness, financial hardship or other issues that might have stopped you getting the marks you would otherwise be capable of.

Talk to your parents and year coordinator early if you wish to find out more information. To get the right information, you might want to contact the tertiary education provider directly to enquire about whether they participate in such schemes. The schemes and acceptance criteria differ in each state and territory.

You might feel that you don’t need or want help to get into the course you have selected. However, knowing you have some help available if needed, can stop you missing out on your next educational milestone. After all, consider all the extra study you could have done if you weren’t so busy taking care of yourself and your CF! It’s only fair that this time is recognised through such equity schemes, especially if CF has prevented you from performing at your best.

In some states, university admissions centres may grant additional “bonus points” to allow you to enter a course with a lower cut-off than the Year 12 mark you received. For more information you or your teacher will need to approach the university admissions centre in your state or territory as they will have different criteria.

You can also apply for scholarships on equity grounds too! For more information, do a search for “equity scholarships” through your state or territory’s universities admission centre or contact the university you’re interested in attending.

Disability services

Universities and TAFEs usually have a disability services departments. This is because all educational institutions must provide reasonable adjustments to students who have a chronic health condition – it’s the law. By meeting with staff from the disability service, they can help to work out what adjustments may be helpful to you, depending on your level of illness and the course you are studying. Examples of adjustments may include:

  • Special exam allowances such as extra time, rest breaks and being able to eat during your exams.
  • Timing of your exams (such as sitting them in the morning or afternoon so they don’t conflict with your treatments, and even making sure you only sit one exam per day at most).
  • Extensions for assignments, tests and exams if needed.
  • Note taking services or permission to audio record your lectures.
  • Lockers so you don’t have to carry all of your possessions around campus.
  • Lecture or tutorial rooms close to bathrooms or lifts.
  • Adjustments to your timetable so that your class attendance is more manageable.
  • Liaising with your lecturers on your behalf if you are having CF related difficulties.

While you may not want to formally register with the disability service, there are many benefits for registering:

  • This means you don’t have to keep disclosing your condition to multiple teachers or academic staff members when you are seeking assistance – you can just have one person to liaise with, especially when you are sick and need to focus on your health.
  • The process for adjustments are streamlined and (usually) automatically activated once you have spoken with the disability service.
  • You can develop a working relationship with the staff, so you have someone to contact if things aren’t going too well.

Remember, disability service staff are experienced professionals with loads of expertise in accommodating the needs of students with chronic illness.

You will usually be required to provide support documentation to the disability service when you register, such as a letter or note from your CF doctor. If you applied for special provisions during year 12, you can bring this along to your first appointment with the disability service. Don’t worry, the disability staff will let you know if they require more documents or not, simply just bring along what you can.

It’s also important to note that even smaller institutions such as private colleges, need to make adjustments for students, even if they don’t have delegated disability staff. If that’s the case, try chatting with your course advisor or student advocate.

Further study in the real world:

“Further study is difficult. I studied at university but did let them know that I had CF so was told I could take up to six years to do my three year course. It helped to know this, just in case I couldn’t keep up with the workload with hospital admissions and just generally being unwell and not being able to attend uni. Most places are very understanding if you let them know.” – Lilly, 42 years

“I decided to do my uni course part-time so I could work part-time to earn some money and enjoy life without getting too sick. Sure, it took me longer to finish my course but I got there in the end and had real experience in the workforce that my peers who did uni full-time did not have. A win for my health and a win for my work experience!” – Janette, 30 years

“I registered with the disability service at my uni and it was excellent. I didn’t have to use the services if I was well and coping but I wanted the option. They helped me with exam provisions and organised extensions on a couple of occasions. Once I even had my end of year exams postponed by three months because I was in hospital when everyone else did them. I was really glad I asked for that help as it helped me do the best I could at uni.” – Jane, 25 years

“Make sure you have a box that you can put all of your medical forms and letters in. If you need to get doctor’s letters for school exam provisions you can use them at uni or TAFE too or from one year at uni or TAFE to the next.” – Caitlin, 26 years

“I am an organised person and I found that being organised was the key to getting all of my work done on time and looking after my health and having fun. Work out a system that works for you to timetable your study, health care and fun so you make sure you have time for everything. Time management can be a drag but it’s an important life skill that you’ll need for the rest of your life – particularly in the workplace.” – Lucinda, 23 years

Career planning:

There are some jobs which people with a chronic health condition may not

be able to apply for, such as the armed forces, the police force, as a firefighter or as a paramedic. Check directly with any such organisation to confirm this. There may be other roles within the organisation that are more suitable. Other than these few types of jobs, there is no reason why CF should hold you back from pursuing the career of your dreams. People with CF do all sort of different jobs so it’s definitely possible to find a career that you enjoy that can fit in with your health needs.

Some people will suggest that certain job are less than ideal if you have CF. For example, being a baker who constantly works with flour dust in the air, a labourer who always needs to be physically strong and fit and work in extreme weather conditions or a doctor who works very long hours would not be ideal for your health. However, there are bakers, labourers and doctors out there who have CF.

When thinking about a career, you might want to consider a few more things to make sure you pick a job which suits your health best. Choosing a career which helps you stay as healthy as possible means you will enjoy it even more.

Here are some things to consider:

  • Jobs involving chemicals, particles in the air or strong odours may aggravate your lungs.
  • Jobs requiring very long hours may make it hard to fit in medication and treatment or mean that you don’t have enough energy to stay well.
  • Jobs requiring a lot of physical energy and strength might be too demanding when you are feeling unwell.
  • A flexible employer will be helpful for time off for doctor’s appointments and possible hospital admissions.
  • You may wish to work part time at some point so a career which accommodates this would be ideal.
  • If you are self-employed you may have more flexibility when unwell but you may find that if you aren’t at work, you aren’t getting paid.
  • Being able to work from home may give you more time in your day for treatment, medication, exercise and rest.