7 Tips to Help You Live on Your Own With Cystic Fibrosis
From getting help with the move to your own place to establishing a new treatment routine, there’s a lot to think about when you move away from home.
With advances in treatment, people who have cystic fibrosis (CF) are living longer, healthier lives overall than ever before, according to research. That means more young people who have CF can start to plan their lives as adults — lives that often include moving away from their childhood home.
People who have CF move out and away from their parents for the same reasons that anyone else does — to go away to college, to start a new life with a roommate or romantic partner, or simply because they crave independence. But CF can complicate the process of moving out and finding your own home in a number of ways.
For example, you may need to set up a new healthcare team if you’re moving to a new city far from home or help obtaining certain housing accommodations at your new college. You’ll need to get as much help as you can for the physical act of moving, and you’ll need to decide when and how to talk about your CF with new roommates, friends, teachers, or supervisors.
Moving out and living away from your parents can be both scary and exhilarating for anyone, but when you have CF, you’re faced with the added burden of treating and managing your condition. This can feel like a balancing act, but you’re more likely to establish and maintain that balance if you prioritize your treatment and staying healthy.
Here are seven tips to help you stay as healthy as possible with CF while making a new home outside the one you grew up in.
It goes without saying that you shouldn’t try to pack your own boxes, load them into a car, and move them into your new place by yourself — no matter how close to home you’re going.
“Most people who have CF who go off to college have really supportive families,” says Meg Dvorak, LCSW, an adult cystic fibrosis social worker at Stanford Health Care in California. She recommends leaning on as many family members, relatives, and friends as possible to do the physical act of moving — which eases the burden on everyone.
Of course, how much packing, lifting, and unpacking you can handle on your own depends on your overall health and disease activity. “If you have more advanced lung disease, just lifting boxes and going up and down stairs — that’s going to wear you out a lot,” says Dvorak.
For anyone who has CF and is undertaking a move, Dvorak recommends listening to your body and not pushing your physical limits. If something takes a bit longer to finish, that’s fine — your health is more important. In practice, that means getting plenty of sleep throughout your move, taking breaks when you feel tired or winded, and drinking plenty of water throughout the day.
And if you don’t have particularly strong family members, consider hiring movers if you can afford them. The peace of mind — and freedom from exhaustion and injury — they offer may well be worth what they charge.
You may decide to stay fairly close to home when you move, which means you can keep seeing the same healthcare team for your CF. Even if this applies to you, your life will be different — so it’s important to prioritize communication with your care team and go to scheduled appointments.
If you haven’t been independent in managing certain aspects of your healthcare before you move out — such as dealing with pharmacies and your healthcare provider directly — then living on your own “would be a bit risky” and you may not be ready for it, says Dvorak.
If you’re moving to a new area and establishing a new healthcare team, be sure to get acquainted with them before your new life gets busy. It’s much easier to discuss any problems that arise with a team you’re familiar with and who already know your health history and treatment routine.
Sticking to a schedule is important for anyone trying to fit a lot of tasks into the day, and this is especially true for people who have CF. Start by creating a schedule that you can actually stick to in the first place.
That means if you’re going away to college, “don’t sign up right away for a full load of classes. Maybe sign up for two or three instead of four,” suggests Dvorak. She also recommends not scheduling any classes or work shifts too early in the morning.
People who have CF “really need their sleep,” she emphasizes. That also means you’ll need to plan out your work — and actually do it, without procrastinating — so that you don’t cut your sleep short, especially on a regular basis. And be sure to avoid drastic measures, like pulling an all-nighter.
Many colleges, Dvorak says, will give people who have disabilities — including students who have CF — priority in scheduling classes according to their needs and limitations.
No matter how well you plan out your new life, one thing you can count on is that things won’t always go according to plan. You may find yourself overwhelmed by academics, having a difficult time socially, missing your family, or having trouble managing your CF. And mental health struggles are common among those with CF: According to research from 2021, about 25 percent of CF patients deal with anxiety, and over 12 percent deal with depression.
To help navigate difficulties, Dvorak recommends taking advantage of any counseling services that your college or healthcare provider offers, especially ones tailored to people who have chronic health conditions. You may learn both practical tips and mental coping skills for dealing with your unique situation.
Finding a one-on-one mentor can also be enormously helpful, Dvorak says, such as through the Cystic Fibrosis Foundation’s CF Peer Connect program. This program matches slightly older people who have CF as mentors to those age 16 or older who are living with the condition. Almost any topic is fair game for discussion, from academic and career concerns to relationship challenges. You can request a mentor on the program’s web page.
If you’ve been successfully managing your CF in your childhood home — which you should be before you consider moving out, Dvorak emphasizes — then you’ll want to stick to your treatment routine as closely as possible in your new location.
That means making sure your new living space can accommodate your needs, such as having a kitchen sink or private bathroom if you need it. Most colleges can provide special arrangements for people who have CF, says Dvorak, including private dorm rooms. But you may also want to live in a space with some sort of communal area for residents or roommates so that you don’t end up feeling isolated.
When it comes to your treatment routine, make sure all of your medical equipment is readily accessible and kept clean and organized, even if this means taking up kitchen counter or bathroom space. “I think it’s really important to set up an area that’s devoted to your CF needs,” says Dvorak. “Have a parent or caregiver help set up a system that’s been working at home,” she suggests — and then stick to that system.
You may want to be “normal” and live like everyone else when you strike out on your own, but people who have CF often need certain accommodations at school or on the job. That means it’s a good idea to be open about your CF from the start.
A letter from your healthcare provider explaining your CF and how it affects you is generally all that’s needed to obtain disabled student services that many colleges offer, says Dvorak. “You can get lots of conveniences to help you navigate school with a chronic illness,” such as privileges for making up exams, preferential class enrollment, note-taking services, or disabled parking.
When it comes to having a social life, Dvorak notes that people who have CF can do almost anything as long as they prioritize treatment — and that often means letting new acquaintances and friends know your treatment needs so that you can gracefully bow out of activities, or so your peers can plan around your needs.
When you first move away from home, you shouldn’t expect to suddenly be independent from your parents and family. In fact, maintaining a close relationship and frequent communication with your loved ones can be enormously beneficial, as it provides a strong foundation and support system, which gives you the tools you need to be successful, says Dvorak.
Remember, communication is a two-way street, Dvorak emphasizes. That means parents should check in regularly, but young people who have CF should also call their parents to let them know about their challenges and successes — or just to talk.
“I don’t think parents sign off at all when a child leaves home,” says Dvorak. So let your parents do their job — stay in their lives, keep them in yours, and all of you will be better for it.
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