Most likely you have some adults in your life that are involved in providing care or support. This could be parents, guardians, family members, or health care providers. You may also have teachers, coaches, social workers or other adult authority figures in your life.
When it comes to brain injury, you may be in a position where decisions are being made around you or you aren’t as involved in decisions/conversations as much as you want. Hopefully this isn’t the case—but if it is, you may need to start advocating for yourself with the adults in your life.
Having important (and sometimes hard) conversations with adults can feel quite intimidating. But it doesn’t have to be. The first step is making sure you feel comfortable and safe talking to an adult. Ideally, your parent(s) should be those people. But it may be that this conversation has to include other adults as well (like your doctor).
Before you keep reading
We know that not everyone has a traditional parent/child relationship. We will be using parents as the relationship example throughout this section of the website, but this information can be used with any trusted adult in your life.
Once you’ve identified who you want to speak to, there are some things you can do to prepare yourself for these conversations [1] [2].
Let’s walk through an example
Amir is a few months into his brain injury recovery, and he’s been feeling increasingly frustrated with how his parents and his doctors talk about his brain injury. They often talk about him like he isn’t in the room. His doctor asks his parents questions, and when Amir is asked a question, his parents jump in to answer on his behalf. He knows he’s struggling with memory, but he also knows what’s going on with him and that he’s capable of answering questions about his health. He decides that he needs to talk about this with his parents.
Ask yourself: what do I need?
Before you start a conversation, make sure you understand what you actually want/need. Sometimes we have a lot of feelings or ideas, but we haven’t taken the time to ask ourselves the question: what do I need, and what do I want this conversation to accomplish?
Amir sits down and writes on a piece of paper: What is bothering me right now about how my parents and doctor talk?
- They don’t ask me questions. They ask each other even if I’m in the room.
- My parents jump in and answer questions before I can.
Next, Amir writes down: What do I need/want to change?
- I want to be asked questions about my health directly.
I want my parents to let me answer questions.
I want to make sure that if I don’t know the answer, then I can ask for help.
By writing down this information, Amir has a clear idea of what he needs and wants to change.
Arrange a time to talk
It’s important to make sure that you and the adults you’re going to talk to are in a mental and physical place to have this kind of conversation. This means:
- No distractions, like phones or loud noises.
- No other commitments to interrupt the conversation, like band practice or a work meeting.
- A comfortable setting where everyone feels safe and welcome.
You may have to tell your parents that you want to talk to them about an issue, but want to do it during a certain time/place when everyone can be fully present and ready to talk.
Amir tells his parents at breakfast that he would like to talk to them about his appointments. He makes sure to give them this information so they know what the conversation will be about. He asks if they can have a later dinner tonight so they can sit down in the living room together after school/work.
Tell them how you are feeling—and be honest (but respectful)
When it comes time to have the conversation, it’s important to share not just what you wrote down about your needs, but how you’re feeling. This helps demonstrate why things need to change.
Remember to be respectful when sharing your feelings, and try to use ‘I feel’ statements instead of ‘you always’ statements. You don’t want to place blame or make other people feel bad—but you want to be honest about how you’re feeling.
Amir and his parents sit down. This is how the conversation starts.
Remember
Your conversation may not go exactly the same way as Amir’s. But this example covers some important parts of the conversation: clear communication, understanding how each person feels, and being honest with each other.
Ask them to work with you on figuring out a way forward
You’ve shared your needs, and your parents are listening. Now is a great time to work together to talk about how those needs will get met. This could look like:
- Writing letters to the people involved, like your doctor.
- Having more conversations with your parents/adults listening and supporting.
- Researching possible supports.
- Talking to peers and providing them with information.
It really depends on what you talk about and what you need.
Amir and his parents take some time to talk about how to make sure Amir can take the lead in conversations about his health, but his parents still have the information they need, and they are able to help him if he asks for it. They come up with the following solutions.
Amir will:
- Be honest if he doesn’t know an answer and will ask for help.
- Politely request that the doctor ask him directly when there are questions about his health.
- Be listed as the main point of contact on any forms or communication platforms.
- Use a schedule that he sets up with his parents so that all three of them can keep track of appointments, information, etc.
- Have weekly conversations with his parents where Amir promises to be honest about how he’s feeling, and they can have a space to talk about what’s working/what’s not.
Amir’s parents will:
- Tell the doctor to please ask Amir if the doctor talks to them instead of Amir.
- Wait for Amir to answer questions instead of jumping in.
- Ask “Would you like me to answer that?” if it appears Amir is struggling, and respect his answer to the question.
- Continue to be at appointments and involved in all the health care discussions.
- Use the schedule that all three of them create to keep track of appointments, information, etc.
- Have weekly conversations with Amir where they promise to listen to how he’s feeling and continue to collaborate in discussions.
