What is ALS? How do I talk about it?

Talking About ALS

  • When did you find out about ALS?
  • Did someone tell you, or did you just hear about it?
  • Did your family talk about what ALS is, or did you have to look it up?

You can find out about ALS in a variety of ways. Some people learn about a diagnosis right away, and others much later. Sometimes younger family members feel angry or mad that they didn’t know their relative had ALS or that their parents didn’t talk to them, link in the case of Lara. Other’s may feel like they have to look everything up on their own, like Bradley—which can be scary. Either of these reactions is totally understandable. You want to know things and be a part of conversations.

So, talking is good—even when it’s hard. But what does communication actually look like in families? How do kids talk about ALS, and with whom?

Let’s check in and see what options you have for talking.

Lara

Even though Lara knew something was wrong, she did not know what.

Lara’s family is part of a tightly-knit community, but the adults were the only ones to talk about things like illness in the family. Lara and her sister were never included in the conversation. Lara had good friends at school but didn’t know how to talk about her uncle’s illness—she didn’t know quite what to say. She felt isolated and alone… she just wanted to know what was going on with her uncle and how she could help.

Talking with your family

Many families out there do a great job of talking about ALS. They are open and share thoughts and information with family members, including youth in the home. They process information and share feelings, which is helpful for all involved.

But, some families have a hard time talking about illness and ALS. Let’s cover some of the reasons why families do not talk about ALS. Do any of these sound like your family?

Your family feels like they are protecting you by not talking about it

Your parents’ and family’s main role is to make sure you are provided for and safe. They may view talking to you about ALS as making you sad and hurt. Parents often say that they don’t want their kids to “worry” about ALS, but what happens is they end up not talking to you about ALS at all.

They are also concerned about what you may find out on your own through the Internet. We know you have access to the Internet. In fact, you grew up with the Internet and access to all kinds of information. You can look up just about anything very easily. However, that information is not always correct. Parents talk about this a lot—they want to protect you from what is out there on the Internet.

What can you do? Let them know you are OK, and that you want to talk about it—as hard as it may be for them to have the conversation. Open and honest is a good way to start.

If you were Lara, what would you do?

  • Lara has some really great friends, some of whom she has known her whole life. She and her friends are all part of the same, tight-knit community and know each other’s families well. They go to the same community center and religious services. Her friends had heard that her uncle was having some health problems, but they didn’t know it was ALS. Because of their shared community, they all understood that it can be hard to talk about things within your family—mostly because their families are the same way. They listened to Lara and were supportive, which made Lara feel less alone.

  • Lara did not know who to talk to about her uncle’s illness, or even what to say. She was still not entirely sure what was going on. She heard ALS mentioned and looked some things up on the Internet. It was pretty scary, especially knowing that her uncle would eventually die. She really wanted to talk to an adult and get some answers.

    One day, Lara came home from school and decided she had to talk to her mom. She went to her mom and said she knew her uncle had ALS and that she was scared. She told her mom how hard it was to see her cry all the time. Lara and her sister were doing everything they could to help her mom, but now Lara needed to know what was going on. Lara’s mom was shocked, but actually grateful Lara brought it up because she did not think she could ever start that conversation. They talked—but not a lot. It would take several conversations for them to get more comfortable and open about ALS, but they eventually did. Even though it was hard to hear some of the information about her uncle, Lara felt better knowing what was going on.

  • It was easy for Lara not to talk to anyone, because no one in her family was saying anything. Lara figured out that her uncle had ALS, but she did not have anyone to talk to. She shut out friends and family and got really sad. Her mom cried all the time, so Lara spent her energy taking care of her mom but never talking about what was really going on. Both Lara and her sister knew but kept everything bottled up.

  • What can you take away from these real-world examples?
  • Did they say or do something that makes sense to you? How can talking to friends about ALS help you in school?

Not Talking

Some of you may be saying—yeah, well I don’t want to talk to anyone. I am fine. I don’t need to talk about everything, all the time. It feels way more comfortable to stay in your room, avoid home, or take on extra shifts at work.

Lots of people feel this way. Maybe they are just too overwhelmed, or too sad to talk. Maybe they are angry that this happened to their family. Or maybe they are just angry that they have to deal with it. There are many reasons why someone does not talk about it.

Not talking—while initially comfortable—can end up being a bad idea. When we don’t talk to anyone, we can’t let go of feelings—good or bad. We need to let off steam, ask questions, and get support. We have met many kids who did not talk to anyone. Some just did not know how to bring it up. They ended up feeling really stressed out, sad, and isolated from everyone. You deserve to talk it out with someone and to get the support you need.

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