Transitioning to adulthood can be stressful and exciting all at the same time. Young people take strides toward more independence and rely less on their parents. If that young adult has a rare or chronic illness, it’s a good time to shift the responsibility of managing medical care from parents to the now, fully grown child.
Young adults need to learn how to:
- Set up appointments and meet with their physicians on their own.
- Depend on friends and significant others when they are ill.
- Make wise lifestyle choices, which may impact their health.
I recommend young adults and their parents discuss this important transition, which can be challenging for both sides. Establishing some guidelines and being thoughtful can help ease the process. One question is: When should this shift occur?
For some people, high school or college graduation can be a natural time to take on more responsibility, especially if the patient is planning to leave home. But even if a patient still lives in the family home – as some do for financial, emotional or medical support – he or she will want to play an adult role in their care.
Community Is Key
Young adult patients don’t need to go it alone, even as they’re trying to become independent of Mom and Dad. I recommend taking these two steps as you build your support system:
- Establish a community of people who can help when you need it.
- Know when to ask for help.
Spending quality time with your support system decreases isolation and supports improved mental health. Aside from your parents, who in your life might be willing to pitch in? Who is reliable and how would you like them to help?
While you once relied solely on one or both parents, now you might build out a deeper bench of people – each with their individual strengths. Some might be able to help with practical tasks, such as picking up a prescription, making a meal or picking you up after an appointment or procedure. Others may be great company when you need a distraction, while you’re managing chronic fatigue or at times when you’re not feeling well enough to go out.
Taking on Case Management
For most young adults, their parents also served as their medical case managers who handled or assisted with scheduling appointments, insurance reimbursement and making health care decisions with your physicians. Taking over all of these tasks and responsibilities can feel overwhelming at first.
The good news is your parents are probably experts at this point and can serve as helpful guides. Start a dialogue in a non-judgmental manner about how to take on some of these responsibilities.
One of the best recommendations for anyone with a complex medical condition is to create and maintain an updated document that captures all of your medications, health care conditions, and physicians. This will save time at doctor’s appointments – especially when seeing a new physician – and can be shared with others when you need someone to advocate on your behalf.
Inviting Significant Others In
Are you dating someone seriously or taking the next step to live together or marry? A long-term romantic relationship can also prompt a shift in who takes the lead in supporting and caring for you. Naturally, some caregiving responsibilities may fall on your partner. Take things slowly, so that your partner is not overwhelmed. Start a dialogue about how comfortable they may be regarding certain aspects of your care. Remember that both you and your parents had many years to get adjusted to your health care regime.
As you begin to include your partner, let your parents know that you have a new source of support. This can be a relief to your parents who may have trouble letting go and fear that you are taking on too much responsibility for yourself. After a couple decades of caring for you, it’s a big change for them. But if you talk about the transition together and go at your own pace, these steps will equip you well for taking good care of yourself.