Whether you’re headed to college, starting a new job, or moving out on your own, it can feel scary to be responsible for managing your life, let alone your psoriatic disease. No matter what path you choose, the best thing you can do is to prepare and take steps to set yourself up for success from managing your health to setting up your own home.
Managing Your Own Health Care
There are some tasks you can do in your mid-teens to start managing your own health such as making appointments (with a parent close by in case you need their help) or learning how to renew prescriptions with your local pharmacy. As you gain more independence, you will eventually be responsible for all of your health care decisions. Steps towards taking charge of your health care include:
Know Your Disease
Learn all you can about psoriasis and psoriatic arthritis, what causes flares of your disease, what symptoms indicate a change in your health, when to go for lab work, and when to call a health care provider for help. Try to stay current as new treatments and research may come up that could change how your disease is managed. With such knowledge, you will be better informed and can discuss your health needs with your provider, which in turn helps influence your decisions about the management of your disease. To help receive the latest news sign up to receive the Advance Weekly e-news.
Find a New Health Care Provider
Unless you have a health care provider who sees both children and adults, one step you take may include changing from a pediatric care provider to a provider who treats adults. To help make this change:
• Ask for a Referral: If you plan to live in the same area, ask your pediatric provider if they can recommend health care providers such as primary care providers, dermatologists, or if needed, rheumatologists or other specialists. It could be someone they know or have had experience working with. If you are moving out of the area, ask your current provider if they know a dermatologist or rheumatologist in your new community.
• Contact the Patient Navigation Center: If your health care provider cannot provide a referral, contact our Patient Navigation Center for suggestions in your new area. Patient Navigators can help you search for a provider who specializes in psoriatic disease.
• Ask your Insurance Company: Your insurance company can also identify health care providers and services covered by your insurance, including treatments. Be aware, not all health care providers may be covered in your insurance plan.
As you identify a new health care provider, dermatologist, or rheumatologist be sure to make an appointment before your last visit with your pediatric provider in case any follow-up is needed and prescriptions need to be renewed. Also, check to see what appointment reminder system your new provider uses such as phone calls or text messages. As your schedule becomes busy such reminders can be helpful.
Request Your Medical Records
When you shift health care providers you will need to have your medical records sent to your new provider to help inform them of your medical history. To start this process, you will need to sign an authorization form from your previous provider and allow time for processing. Be sure to request a copy of your medical records for yourself in case you need them for your first appointment. It’s important to know your medical history and to keep track of information for your own records (such as past and current treatments and dosage).
Know Your Insurance Coverage
If you have insurance, identify what your ID and group number are, as well as what your deductible amount is, if you need to pay a “co-pay” for each visit, and how much it is when you see a health care provider or when you fill a prescription. Check to see if pre-authorizations are needed for specific medications or procedures.
If you don’t have insurance, look into state programs or contact the Patient Navigation Center for options that may include patient assistance programs. Many teens and young adults stay on their parent’s insurance plan until they reach age 26.
Not only will you likely need a new health care provider, but you may also need to identify where or how you will receive your prescriptions. Check with your insurance company for a list of pharmacies they work with or find one that is close by. Your insurance company may also have access to mail order options or online pharmacy access. When you use such services be sure to keep in mind prescriptions may take 7-10 days for delivery.
When transferring prescriptions to a new pharmacy be sure to have all the names of your medications and the number of refills remaining available. If you are running low on medication, ask your current provider for a refill before moving to another provider to ensure there are no gaps in treatment. It is possible you may need to wait weeks or months to see your new health care provider. It’s important to maintain your treatment regime as prescribed to help avoid flares and maintain your health.
Taking a New Path
Now that you are taking steps towards managing and advocating for your own health care you may also be considering different paths for your future. Such paths could include college or starting a job. In either case you can live and enjoy life with psoriasis or psoriatic arthritis no matter what direction you choose. Choose a path below for tips to help you through the transitions:
Off to College
If you are choosing to go to college, here are some tips to help make transitioning to college life a bit easier.
As you start creating a life on your own you may move into your own home which means you may have responsibility for paying bills, maintaining a budget, cleaning, laundry, and stocking supplies. Tips to help you include:
Choosing Household Products
When you move away from home there are so many products that you may not have had to buy before. Examples of such products include:
• Toilet paper
• Laundry detergent or dishwashing liquid
• Shampoo, conditioner, or soap
• Cleaning supplies
The one thing all of these household items have in common is that they could impact your psoriasis. Before leaving home, check what brands are used in your household and stick to buying those for your new place. If you are curious about other brands check the National Psoriasis Foundation's Seal of Recognition program for a list of products for skin and joints that were created or intended to be non-irritating and safe for those living with psoriasis and psoriatic arthritis.
Stocking Your Kitchen
It can be tempting to load up on pizza, chips, ramen noodles, burgers, and hot dogs. Sometimes this is due to being on a tight budget or just wanting the freedom of making your own choices. Choosing healthy foods is an important part of managing your disease and overall health. For more information about how to make healthy food choices part of your life request the Healthy Eating Guide. A few tips to help make the most of your money include:
• Eat before you shop. If you are hungry, you are more likely to spend more and buy unhealthy foods.
• Shop smart. Stretch your dollar by buying what is on sale or in season. Look for the store brands of your favorite foods. Often times they are less expensive and taste just as good.
• Buy whole foods. Not only are whole foods (fruit, vegetables, whole grains, nuts, and legumes) packed with good nutrients, they may be less expensive than prepared or processed food. Try making a smoothie or salad with fruits and vegetables that are in season.
For more tips about eating healthy on a budget visit MyPlate.gov.
Coping Skills for What Comes Your Way
Prior to making changes in your life and becoming more independent your parents took responsibility for many decisions you now need to make on your own. Tips to help manage what comes your way include:
It’s Your Schedule
Previously your parents made sure you arrived on time for medical appointments, school, practice, or possibly even work. To take control of your schedule (and if you have not done so already) keep a daily or weekly schedule on your phone or other type of planner. Add your appointments with your dermatologist or other health care providers immediately when you make them, including time for travel to and from appointments.
Manage Your Time Wisely
In addition to managing your daily or weekly schedule, identify your priority tasks for the week. These tasks could be a work project that needs to be completed or making time to study for an exam at the end of the week. Maybe you have a prescription that needs to be refilled or you need to make an appointment. Making a to-do list may help. Take time to prioritize what is important and needs to be completed to avoid the stress of having to do something when you do not have enough time later.
Coping With Stress
Life can be full of many stresses beyond living with psoriasis or psoriatic arthritis. Issues related to work, classes, money, social media, friendships or family issues, and even what the future may be can all increase stress levels. Learning how to cope with stress in a healthy way can help to avoid or minimize potential flares of your psoriatic disease. A few ways to help manage stress include:
• Be active and spend time outside. Go for a bike ride, run, walk, or swim. Not only does exercise help increase your heart rate it also releases endorphins to help boost your mood and reduce feelings of stress and anxiety.
• Relaxation exercises with deep breathing, which can be done anywhere at any time, can help calm the body and mind. Try yoga, tai chi, or qigong which combine deep breathing with physical activity and muscle relaxation.
• Use journaling, art, or music to help express how you feel. Understanding your emotions through self-expression can help you process what you think and provide a way to relieve your stress.
If you find that you cannot cope with the stress or anxiety in your life, consider speaking with a licensed mental health professional such as a counselor, therapist, or psychologist about your feelings and what you can do to help cope with the stress in your life. Find a licensed mental health professional near you.
For more information about managing stress contact the Patient Navigation Center to receive the Stress Management Quick Guide.
Building a Support Network
Being and talking with others like family or friends can help reduce stress and offer you support. It is important to find others who can support you and help you understand that your psoriasis and psoriatic arthritis does not define you as a person. When you feel ready to talk about your psoriasis or psoriatic arthritis it may help to develop a few short phrases to tell others. If someone reacts in a way that does not make you feel good or supported then it might be best to move on and look for others who accept all of you, including your psoriatic disease. It may take a while to find friends and family members who truly accept you for who you are but it is worth the wait.
If you are considering living with roommates to help with expenses, share that you have psoriatic disease sooner than later to help create a supportive environment when at home. Above all, do not be afraid to ask for help if you need it. Knowing there is help and support if needed can help relieve the burden stress creates.
Use these tips to help manage your psoriatic disease no matter what path you take. There may be bumps or challenges along the way but with support and knowing what resources are available to help you, you can be successful as you learn to manage life on your own.
Preparing for Life on Your Own: A Webinar for Teens
Listen as Melissa Leeolou, a young adult who knows what it’s like to live with psoriatic disease as a teen, offers practical tips as you transition to life on your own.