For teenagers and their families, rare disorders bring unique challenges. Here are some tips to make these formative years a bit easier. 

By Gina DeMillo Wagner

Even under the best of circumstances, adolescence is tough. There’s the social pressure of trying to fit in with your peers, academic demands, power struggles with parents, rivalry with siblings, and the stress that comes with growing up and figuring out who you are. 

But what happens when your teen years are also marked by rare disease? How do you navigate the additional challenges – physically, mentally, socially, emotionally?

In some respects, living with rare disease offers an advantage over your peers. You’re already an expert at overcoming adversity and adjusting to unwelcome changes in your body. Yet, in many other ways, life is harder: trying to fit in when you already feel so different. Watching your peers reach milestones that you may not reach. Juggling medical appointments that interfere with school and social activities. 

We spoke with several teenagers and their parents about how they cope with different aspects of living with rare disease. Here are their best tips and advice.

Finding the right friends is crucial – for teens and their parents. 

The number one tip we heard from teens and parents is to form healthy bonds with people who are empathetic to rare disease. Several studies show that close friendships can reduce stress, increase self-esteem, reduce anxiety and depression, and strengthen your mental health. But how do you find the right friends? It may require some trial and error until you connect with people who you are comfortable with, who celebrate who you are, and who are kind and fun to be around. Pay attention to how you feel around certain people. Do they uplift and support you? Do they make you laugh? Do they avoid gossip and drama? Is there a healthy give-and-take during conversations? If so, those are good signs!

Parents need their own support system too. They need adult friends to lean on emotionally as well as friends who they can have fun with and temporarily escape the stress of caregiving. A network of adult friends can also jump in in times of crisis, helping with meals, driving, and other tasks. 

If you’re struggling to make friends, try searching for local meetups or activities that interest you. Ask your care team about adolescent support groups. Or connect with patient advocacy organizations, which often have social events. If you attend school, look at extracurricular offerings or clubs you can join.  

Develop a plan to combat isolation

Isolation can appear in many forms. Many rare teens report feeling left out when they watch their peers doing activities they can’t, like driving a car, playing sports, staying out late, or eating foods that they can’t tolerate. Teens can feel isolated at school if they have learning differences or other invisible disabilities. Or they may face ridicule for using medical devices, such as a wheelchair. Sometimes isolation is more subtle, like a nagging feeling that your life is different than your friends.

Have a plan in place before feelings of isolation overwhelm you. Make a list (use a journal, voice-to-text, or the notes app on your phone) of things that help you feel connected to others: it might include calling a friend. Attending a support group. Going to a coffee shop. Reading through old notes and letters from loved ones. Talking with a therapist. Asking someone for a hug or to just sit with you in silence. Attending a meetup with other rare disease teens. Caring for a pet. Volunteer work. Attending a religious service or meditation class. Or even drinking tea and curling up with a good book or movie. 

When feelings of isolation arise, go to your list and choose something that feels right to you. 

Find common ground with your siblings

It’s common for teens with rare disease to feel left out when their typical siblings are doing activities they can’t physically do. Likewise, many typical siblings report feeling jealous of the attention and care their rare siblings receive. At the root of sibling rivalry is feelings of competition or inadequacy. Siblings compete for parents’ time and attention. Or, they feel inadequate if they perceive another sibling is performing better.

To help with this, try to avoid comparing. Celebrate each other’s unique strengths and look for common interests or activities to enjoy together. While it’s important to make time for each child, be sure to also find activities that everyone can enjoy, whether it’s movie nights, picnics, board games, music, cooking, or exploring local attractions like parks or museums. Keep a list of ideas on your refrigerator or give each sibling a turn planning a family night once a week. 

Acknowledge the struggles and embrace the possibilities 

When living with a rare disease or disorder, it’s easy to dwell on all the things you can’t do. (And, it’s important to acknowledge and grieve those losses.) Yet, it’s equally important to remember the things you can do. What talents and strengths can you celebrate? What do you look forward to? Hope may feel scary, but studies show that optimism can contribute to better health outcomes.

For your emotional wellbeing, it can be helpful to take time each day to remind yourself of what’s possible, to set realistic goals, and to take steps toward those goals – no matter how small.

Resources:

• Global Genes offers an emotional toolkit specifically for teens living with rare disease. Access it here. 

• Rare Youth Revolution is a magazine and website dedicated to teens and youth living with rare disease. They offer news, blog posts, personal stories, and other resources to help you feel less alone. Learn more here. 

• If you’re experiencing any sort of bullying or ridicule, tell a trusted adult and ask for help. The anti-bullying organization Stomp Out Bullying offers live chats with trained volunteers who can offer help. Additionally, here is a cyberbullying guide that provides parents with valuable tips and actionable steps to help their children be safe online.

• Sites like HeyPeers have searchable databases of peer support groups, including those for teenagers. They offer chat rooms and virtual support for various conditions and chronic illnesses. 

• NORD offers a directory of resources for patients and families, including links to organizations offering peer support, plus webinars and fact sheets. Learn more here. 

• If you’re in crisis and need to chat with a counselor, text 741741 or visit www.crisistextline.org. You can also search for mental health hotlines and local crisis therapists near you. If it’s a life or death emergency, call 911.