You are entering a new stage in your life and taking more control of your life. Your family may be there to guide you as you create your own life. However, you are ultimately going to be the decision maker, responsible for your own future and possibly caring for a family of your own.
Creating Your Independence
Your parents have provided you with guidance and support throughout your life, and your relationship with them has evolved. As a young adult, your relationship is different than at any other time in your life. You appreciate all the things that your parents have done for you, but now you are making your own decisions, thinking about and planning for the future. Knowing how to manage your primary immunodeficiency (PI) is essential to your future.
If you were diagnosed as a child, your parents probably played a large role in your healthcare. It can be a big shift for you since your parents have been managing your healthcare and school demands .It may be difficult for your parents to let go, fearing that you may not make the best choices. Even though you are in charge, it is helpful to keep in communication with your parents; turning to them for support and guidance doesn’t stop just because you are an adult. They can be very helpful!
At the age of 18, you are legally considered an adult. Parents are no longer able to access your healthcare records or speak to your healthcare team without your written permission. Therefore, it is important that you are in control of all aspects of your healthcare. Click here for advice on managing your healthcare.
Your PI will require some unique life adjustments as an adult. Support from your family, friends and an effective healthcare team will enable you to properly manage your healthcare and lead a fulfilling and productive life.
Build a Support System
You need to be able to take care of yourself independently of your family and, possibly, under different living conditions. This may mean depending upon friends and significant others for help when you are need help or are sick. Learning to ask for support when you need it can be difficult, but you should assess which role your family members and friends are best suited to fill. Some may be helpful with logistics, like picking up medications when necessary or dropping you off at a procedure or appointment. Others may be supportive in an emotional sense, like listening to your frustrations and helping you make sensible decisions.
Your Future Family
The time may come when you consider a committed relationship, marriage or even having a family of your own. In addition to the general responsibilities that come with raising a child, you and your spouse will want to think about managing your health while raising a child. Since some types of PI are genetic in origin and are passed on in families, you should ask your healthcare provider or a genetic counselor whether yours is one that can be inherited by your children. Click here for more information about inheritance.