Early adulthood (ages 18 to 26) is a time to discover what it means to be independent, explore different educational and career pursuits, travel, form relationships, and take more responsibility for one’s own health.
As a young adult with a rare disease, there are many paths you can take after completing high school, including postsecondary education opportunities and vocational endeavors. While exploring these options, it is important to learn how to effectively understand and communicate your needs. There are three parts to this:
• Knowing yourself;
• Knowing your needs; and
• Knowing how to get what you need.
Learn about your rare disease and how it affects your daily activities, communications, skills, strengths, weaknesses, and social interactions. The better you understand your rare disease, needs, and rights, the better you can communicate to others and advocate for yourself. Preparing for the next steps for education and work is a time to ask many questions, reflect on goals, and start planning to better achieve them.
“Taking Control” Toolkit Series
This toolkit is a part of a “Taking Control” series, and numerous important topics are covered in the Taking Control: Gaining Independence as a Young Adult with a Rare Disease toolkit, including:
• Health Insurance 101;
• Managing Treatment and Receiving Medical Care;
• Independent Living; and
• Building Self Confidence.