Talking About FTD  

The changes that are happening in your family are very personal and hard to describe. It is normal to feel worried that others won’t understand. In fact, at first, they may not.

When the time is right for you, talking about FTD can help you find relief from the isolation and strong emotions that you may be experiencing. Having even a few people who understand can help you redirect your energy and focus on schoolwork and activities you enjoy. People who understand or are willing to listen can be a sounding board for your feelings when things are tough.

The more you talk to people, the more comfortable you will feel asking for help when you need it. You may be surprised how many people are good listeners and how many people want to help.

What to say and when to say it — you’re in charge

Give yourself time to think through what, how and with whom you want to share the details of your situation. You can decide how much you’re comfortable sharing, and you can decide how you will respond to other’s questions about FTD. It takes practice but in time it will get easier.

In the beginning many teens find they only want to share their story with people whom they trust and those who will respect their privacy. It’s ok to say, “I’m not ready to talk too much about it yet, but I want you to know what is happening at my house.” Later, when you’re more comfortable, you can share more details. It’s up to you.

Pick your time and your words

Think about when is a good time to share this news. You don’t want to start this serious conversation just as you’re walking into a classroom or right before a movie is about to start. You can also give thought to what you do and do not want to say. Practice with some relatives or close friends to find the words that are right for you. Some families or teens decide to write a short note or letter and send it to the people who need to know.

The person you’re telling will probably have questions for you. If you know the answers and want to share details with them, that’s fine. But you don’t have to. You can say, “I don’t have that much information right now. I just wanted to let you know about my mom/dad.”

Sharing is good medicine

Sharing your story and your feelings on your own terms will help you deal with the changes that you experience as a result of the disease. Talking about how FTD is affecting your family will allow people close to you to offer support. If you are open about it you will soon realize the best ways to share information, and the people in your life who are easiest for you to talk to.

In the section titled Stuff You Can Use you will find suggestions for how to tell your friends, coaches or teachers about FTD. You can print off the list and use it to help you have conversations about FTD, or use the list as a starting point for writing your own way to talk about FTD.