Resource Guide for Young Adults Managing a Chronic Condition
Table of Contents
Are you a young adult living with a chronic disease such as asthma, depression, or a heart condition? If so, you’re not alone. Research shows in 2019, 53.8% of adults aged 18-34 had at least one chronic condition, and 22.3% had more than one. According to the Centers for Disease Control and Prevention (CDC), six in ten Americans live with at least one chronic disease, like heart disease and stroke, cancer, or diabetes.
The resources on this webpage will help you become more health literate and take control of your health as a young adult managing a chronic condition. Many chronic conditions can be managed and even prevented through lifestyle choices that reduce risk factors for each condition.
The Power of Lifestyle and Prevention
Our health is the product of many factors, some of which are modifiable. Non-modifiable determinants of health include genetics, socio-economic background, and more. Modifiable lifestyle factors include diet, physical activity levels, and more. During this stage of life, it’s more important than ever to make positive lifestyle choices to maintain your health. The following are some of the most impactful decisions you can make to achieve and maintain positive health outcomes.
Physical Activity
Regular physical activity has a plethora of health benefits. helps to manage and prevent obesity. Diet and exercise are two of the most impactful modifiable lifestyle factors. Maintaining both can help manage and sometimes even prevent the conditions listed above and discussed throughout this webpage.
| Physical Activity Links and Tips |
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Benefits of Physical Activity Centers for Disease Control
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On the Move: Staying Active Suffolk County Department of Health
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Visit your local YMCA or gym. Popular, affordable gyms on Long Island include Planet Fitness and Crunch. Group Fitness classes are also widely available through studios such as F45 and Orangetheory Fitness. If you’re a student, ask if the gym offers a student membership discount.
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Ask your employer how they promote physical activity in the workplace. Many employers offer programs such as step challenges and active commuting incentives.
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Health insurance provider coverage and/or reimbursement for gym memberships (anchor to section below that goes into this in more detail)
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Looking for a team sport to keep you motivated and active? Organizations such as LI Kick and LI Athletics offer recreational and competitive sports teams for adults. In the summer, join a beach volleyball league such as those offered through Long Island Volleyball and East End Volleyball.
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Use your Facebook to explore groups related to physical activities that interest you. Groups exist for Long Islanders that enjoy hiking, cycling, climbing, and more.
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Nutrition and Diet
Diets high in sodium, saturated fat, and sugar greatly contribute to diseases such as diabetes and heart disease. Maintaining a balanced diet is key to chronic disease prevention and self-management. Consuming the proper nutrients for your body helps support vital processes necessary for maintaining optimal energy levels, metabolic processes, muscle repair and growth, immune system functioning, and more. Among those already diagnosed with chronic conditions, a nutritious diet can alleviate symptoms and slow or even reverse disease progression. For more information on local nutrition programs as well as financial support and food assistance, please see the links listed below.
Drug, Alcohol, and Tobacco Use
Misuse of alcohol, tobacco, or other drugs can have detrimental effects on our mental and physical health. In the short-term, substance misuse may result in impaired brain function and decision making and may increase one’s risk for experiencing violence, injuries, or accidents. Prolonged misuse may lead to mental health issues, the development or worsening of chronic diseases, poor academic or job performance, relationship difficulties, and/or financial strain. To learn more about how substances impact your health and to identify local support programs, please visit the links below.
| Drug, Alcohol, and Tobacco Use Links |
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Vaccination
Staying up to date on recommended vaccinations is one of the best things you can do to prevent serious diseases and infections.
| All adults need these routine vaccinations: |
- COVID-19 Vaccine (1+ dose annually): This vaccine helps protect you from serious disease, hospitalization, and death from COVID-19. People with chronic health conditions may be at increased risk for severe COVID-19. Learn more here.
- Influenza/Flu Vaccine (1 dose annually): This vaccine helps reduce your risk of seasonal flu and its potentially serious complications. People with chronic health conditions may be at increased risk of flu complications. Learn morehere.
- Tdap Vaccine or Td Vaccine (every 10 years and when pregnant): The Tdap vaccine helps protect you from tetanus, diphtheria, and whooping cough (pertussis). The Td vaccine helps protect you from tetanus and diphtheria. Learn more here.
- HPV Vaccine* (3 doses before age 26, no boosters required): This vaccine helps protect you from six types of cancers caused by Human Papillomavirus (HPV) and can help prevent genital warts. This vaccine is ONLY recommended for adults who have not received this vaccine previously. Learn more here.*For those who have NOT been vaccinated against HPV previously. If you have already received the HPV vaccine during adolescence, you do NOT need to repeat this vaccine series. If you’re unsure if you’ve received this vaccine, you can check your immunization record which can be obtained by your healthcare provider, pediatrician, or school health center.
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Some adults will need other vaccines too. Vaccine recommendations may vary based on age, life events, job, travel, and chronic health conditions. For more information on these recommendations, click here.
The CDC Recommended Adult Immunization Schedule lists all recommended vaccinations in an easy to read format.
The full version of the CDC Recommended Adult Immunization Schedule includes recommendations for people with chronic health conditions, people who are pregnant, and people employed in healthcare (note: scroll to Table 2 for this information)
Unsure which vaccinations are recommended for you? Use the CDC Adult Vaccination Assessment Tool to get a personalized list of vaccinations that you may benefit from based on a brief questionnaire about your specific risk factors.
Where can I get vaccinated? Primary care offices, pharmacies, workplaces, community health clinics, college/university student health centers, school-based health centers, and numerous other settings may provide vaccinations. Your primary care provider (PCP) should carry vaccinations recommended for adults. Talk to your PCP about your vaccination needs at your next appointment. If you do not have a PCP or would like to get vaccinated sooner, pharmacies can provide vaccinations to adults 18 and over. To find a pharmacy vaccine provider near you, use the Vaccines.Gov Vaccine Finder.
If you do not have health insurance, you can receive preventive care, such as vaccinations, from a Federally Qualified Health Center (FQHC). To find your local FQHC, visit:
All health marketplace plans, Medicaid, and most private health insurance plans are required to cover all routinely recommended vaccines without a copayment or coinsurance when provided by an in-network provider. This means you can receive the vaccines you need at little or no cost to you.
How do I obtain my immunization record? As a legal adult, you have the right to access your own healthcare information, including care received as a minor. You may contact your current or previous healthcare provider(s) to request your medical records. Click here for more information on how to obtain your immunization record
Vaccines are very safe, with extensive safety testing and monitoring for all recommended vaccines. With misinformation about vaccines prevalent in current discourse, it is normal to have questions or concerns. The CDC has numerous evidence-based resources to help you learn more about vaccines such as:
It is important to ensure you are receiving your information about vaccines and health matters from a reliable, accurate source. The Health Literacy & Self-Advocacy section of this site has more information on how to identify reliable, accurate sources. For vaccine information, here are a few reliable, accurate resources:
Recommended Screenings
There are screenings for many conditions that can help you prevent or detect a health condition sooner than later. Screenings can either be done on your own (self-screenings) or by a medical professional in a clinical setting (clinical screenings).
Some chronic health conditions may increase your risk of certain diseases or conditions. This may impact how often you should receive recommended screenings, and your personal screening schedule might differ from the information below. Always talk with your healthcare provider about your medical history, health conditions, and other risk factors to determine your personal screening recommendations.
Recommended self-screenings include:
- Breast Self-Awareness & Self-Exams - Recommended regularly, start in your 20’s. You should know how your breasts normally look and feel and report any breast changes to your healthcare provider. For more information on how to conduct a breast-self exam, visit the Know Your Lemons website or mobile app.
- Skin Cancer Screening & Self-Exams - No general recommendation, talk with your healthcare provider about how often you should receive clinical skin exams or self-exams. A self-exam is conducted at home with yourself and another person or a mirror to check all areas of the skin. The American Academy of Dermatology has how to guides for how to conduct a self-exam and what to look for.
Recommended clinical screenings include:
- Clinical Breast Exam (CBE) - Recommended every 3 years in your 20’s & 30’s
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A physical exam by a healthcare provider to check the breast for lumps or other changes. Typically given in an OBGYN setting.
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Pap Smear or Pap Test - Recommended every 3 years for people with a cervix ages 21-29, and every 5 years with an HPV co-test for people with a cervix ages 30-65. A test carried out on a sample of cells from the cervix to check for abnormalities that may be indicative of cervical cancer. An HPV co-test will also check for Human Papillomavirus (HPV) infections, which can cause cervical cancer. Typically given in an OBGYN setting.
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Oral Cancer Screening - Recommended every X years starting at age 18.
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Skin Cancer Screening - No general recommendation, talk with your healthcare provider about how often you should receive clinical skin exams or self-exams.
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Sexual Health Screening - Recommendations differ depending on sex assigned at birth, sexual activity and behavior, and other factors. See the CDC Sexually Transmitted Infection Screening Recommendations to learn your specific sexual health screening needs.
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Testicular screening - see guidelines https://www.cancer.gov/types/testicular/patient/testicular-screening-pdqhttps://www.cancer.gov/types/testicular/patient/child-testicular-treatment-pdq
Consult your doctor about any other health screenings that they would recommend for you.
Health Literacy & Self Advocacy
When it comes to your health, you are the expert. While medical providers can assess, diagnose, and treat illnesses and conditions, only you are in control of your health. From maintaining a healthy lifestyle to recognizing signs and symptoms of illness and implementing a treatment plan, you are in charge. As a result, it is crucial to understand how to best care for your health and wellness and advocate for yourself when faced with barriers to good health.
Using and understanding reliable and accurate health information is an important part of maintaining good health. Living in the digital era, it is easy to feel inundated with the amount of information available and it can be difficult to identify which sources of information are most objective, truthful, and beneficial. The CRAAP Test is one way to discern the value of information found when seeking health information and, ultimately, protect yourself from misinformation. This test involves evaluating a source of information according to five domains:
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Currency - Is the information you found up to date?
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Relevance - Is the information you found relevant to your needs?
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Authority - Who is the author/publisher/source/sponsor of the information? Is the author qualified to write on the topic?
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Accuracy - Is the information supported by evidence? Has the information been peer-reviewed? Can you verify any of the information in another source?
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Purpose - Is the purpose of the information/publication to inform, teach, sell, entertain or persuade? Are the author’s intentions clear? Is the information objective and free from bias?
Source: UChicago Library
These questions help to ensure that you are accessing the most reliable sources of information that will equip you with the correct knowledge and tools to achieve good health. By seeking out trustworthy information, you are an active participant in your own health.
In addition to using the most relevant health information, it is crucial to be able to navigate conversations and healthcare decisions with your provider. Oftentimes, individuals, especially young adults who are entering a new period of autonomy, are hesitant to visit a provider, to speak about challenges they may face, or to ask questions. This may lead to feelings of uncertainty, frustration, or dissatisfaction surrounding one’s health and wellbeing. Being empowered to speak up and make informed decisions about your health are crucial steps to being a self-advocate. The following links can be used to increase your confidence about navigating healthcare relationships and take control of your health:
| Health Literacy & Self-Advocacy Links |
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The CDC defines health equity as “the state in which everyone has a fair and just opportunity to attain their highest level of health.” At the national level, achieving this requires ongoing societal efforts to address historical and contemporary injustices; overcome economic, social, and other obstacles to health and health care; and eliminate preventable health disparities.
On an individual level, it is important to understand the concept of health equity and understand the importance of self-advocacy. A lot of folks might fit into more than one category of a “minority,” whether it’s your race, ethnicity, gender, or perhaps your disease is rare and you don’t have as many readily available resources, but that doesn’t mean you can’t get the best care possible.
It’s important to choose a linguistically competent provider that fits your needs as an individual. Only you can determine whether a provider is culturally competent to treat you in the way you need. This goes for all of your physicians, from primary care to specialists. If you don’t feel a physician meets your needs as a patient, you can always switch providers. Don’t hesitate to seek one that better fits your needs.
For people with and without chronic conditions, it’s particularly important to have a primary care physician. Preventive care is just as important as sick care or condition management. Primary care physicians can also act as advocates for patients to supplement the patient’s own self-advocacy efforts, which are discussed in the previous section of this guide.
Communicate with your providers through patient profiles and portals to ensure they have the information they need to see the full picture of your health, which will help them better care for you. Think about the qualities you want in a healthcare provider, and ask yourself whether your providers have those qualities.
In New York, young adults can stay on their parents' employer health insurance plan until they are 26 years old, regardless of their marital status, school enrollment, or living situation. Young adults covered by Children’s Medicaid or Child Health Plus can maintain coverage until age 19. Whenever the time comes for you to find and enroll in your own health insurance, there are several paths to enrollment.
Obtaining Coverage Through Your Job: Some employers offer some kind of health insurance coverage, which typically requires the employee to pay a “premium,” a portion of the cost of their coverage.
Obtaining Coverage Through Your College: Universities and colleges often require students to have health insurance to attend. If you don't have insurance, they often offer plans for students.
Obtaining Coverage Through the NY State of Health Marketplace: NY State of Health is New York’s official health plan marketplace. You can quickly compare health plan options and apply for assistance that could lower the cost of your coverage. You may also qualify for Medicaid or Child Health Plus health care coverage through the Marketplace.
Medicaid provides essential medical services for persons receiving Public Assistance and other low-income persons. Services covered include inpatient and outpatient hospital care, physician services, skilled nursing care, laboratory and X-ray services, early and periodic screening of children, home health care services, and transportation services. Anyone can apply for Medicaid through the NY State of Health marketplace.
Health Insurance Enrollment & Navigation Assistance: There are a variety of programs on Long Island that provide free health enrollment assistance to eligible populations. You may qualify for free enrollment assistance provided by one or more of the following programs:
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The Nassau-Suffolk Hospital Council is an agency of certified Community Health Advocates (CHA) that can help you navigate, understand, and use your health insurance coverage.
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Blind and/or disabled young adults may qualify for enrollment assistance through the Nassau-Suffolk Hospital Council’s Aged, Blind, and Disabled (ABD) Program
No matter how short, it’s important to always avoid a gap in health insurance coverage when possible, particularly as a young adult managing a chronic condition. Programs such as COBRA and New York State Continuation Coverage can help you avoid such a coverage gap in the event of qualifying circumstances.
“In-Network” vs “Out-of-Network”
When weighing healthcare providers and facilities, cost is an important factor. If you have health insurance, your out-of-pocket cost for healthcare will depend on whether your provider is “in-network,” or whether they take your health insurance. “Out-of-network” coverage varies by health insurance plan, and they may not be covered or reimbursable at all. When possible, always investigate your in-network provider options before seeking care to avoid unexpected costs. Most health insurance companies have apps, patient portals, and/or websites where beneficiaries can browse in-network providers.
Ultimately, obtaining and maintaining health insurance coverage is extremely important for young adults as they become responsible for their healthcare costs. Don’t hesitate to seek assistance if you need it.
At age 18, you become a legal adult and will become legally responsible for your healthcare. This age comes with other major changes to your healthcare, like learning to manage your own healthcare and health needs. This includes coordinating your own healthcare appointments, prescription refills, medical supplies/equipment, and follow-up care. Eventually, you will need to transition from your pediatrician to an adult primary care provider of your choosing.
Got Transition refers to this uniquely challenging period as a health care transition: the process of getting ready for healthcare as an adult.
Health Care Transition Resources from Got Transition:
| Your Health and Privacy Links |
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According to the National Institute of Mental Health, people who have a chronic disease are at a higher risk of developing depression. Depression can be triggered by a number of factors, from anxiety to medication to family history. If you have feelings of anxiety or depression, don’t ignore them. Seek help and support from loved ones and healthcare professionals if needed.
| Mental Health Support Links |
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See below for resources specific to different chronic conditions. This list is by no means comprehensive. Do you know of other great condition-specific resources available on Long Island, in New York, or beyond? Please send them to lihc@nshc.org so we can add them to this list.
| Sexual and Reproductive Health-Specific Links |
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Many condition-specific resources and community-based organizations exist on Long Island, in addition to the ones listed above. Review the Long Island Health Collaborative’s Membership Directoryfor a full list of our member organizations, some of which specialize in serving people with the conditions listed above, and many others.
See below for resources specific to different populations. This list is by no means comprehensive. Do you know of other great population-specific resources available on Long Island, in New York, or beyond? Please send them to lihc@nshc.org so we can add them to this list.
| Undocumented Population Health Resource Links |
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Many population-specific resources and community-based organizations exist on Long Island, in addition to the ones listed above. Review the Long Island Health Collaborative’s Membership Directory for a full list of our member organizations, some of which specialize in serving the populations listed above.
There’s an app for just about everything nowadays, and healthcare is no exception. Many free mobile applications can help you manage your chronic condition and navigate your own healthcare. Nearly all health insurance providers have an app or web-based portal for their enrollees. Download your health insurance app to find providers, learn about your coverage, and more. Remember, these apps do not replace the role of a trained healthcare provider.
Many population and condition-specific resources and community-based organizations exist on Long Island. Review the Long Island Health Collaborative’s Membership Directoryfor a full list of our member organizations, many of which provide services and resources for a wide scope of populations, including young adults with chronic conditions like you.