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Making your own health choices

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Making your own health choices

Making your own health choices

A guide for young people with innate variations of sex characteristics

What This is About

This booklet talks about ways you can make your own choices when it comes to your body and health. It is for young people who have bodies that are a bit different. You might know this as an intersex variation, a difference or variation in your sex characteristics, or by a medical diagnosis. Your body is your own and you get to make choices about what happens to it. When you see a doctor, it may be tricky to talk about how you feel. This booklet is here to support you with feeling in control when you are at the doctors. What you say, think, feel, and want for your health is important and should be listened to by the grown ups in your life. These grown ups are your Trusted Adults. While you have the right to make choices about your health, as a kid you are not responsible for this on your own. When trusted adults help you to make a choice about your health it is sometimes called supported decision making. Sometimes parents/guardians can have difficulty allowing us or supporting us to make our own choices. As you get older you will have more and more power and control over your decisions. This booklet is designed to help you and your trusted adults with supported decision making. Your parents will also need to find more information about your healthcare and how best to support you to make decisions.

About Trusted Adults

The important grown-ups in your life are called your trusted adults. These are people you know and trust. They may include your parents, grandparents, or other family members you are close to, or they can be other adults you know well like your teacher, neighbour, peer support worker or your family doctor. Who your trusted adults are will be different for everyone. These adults should listen to you, respect you, help you feel safe by not judging how you feel. They should also be able to help you with difficult things. A trusted adult is usually the first adult you would go to when you are scared, embarrassed or need help. A trusted adult might also be another relative such as your aunty or uncle, grandparents or even a sibling if they are an adult. Sometimes you may need to rebuild trust with one of your trusted adults such as a parent. This may need to happen if they have made a choice for you that you don’t agree with, like a health decision that affects your body. You are allowed to be upset, unhappy or hurt by the choices that were made for you before you could make your own. Page 2 Making Your Own Health Choices Talking with a professional like a counsellor or therapist may help you better understand why those health choices were made for you and also help you work through any difficult feelings you have about those decisions. This professional may also help you rebuild trust with one of your trusted adults.

To be a trusted adult a person needs to be:

1. An adult (someone over 18 years old) Adults are important to include when figuring out your healthcare because they have different rights and responsibilities than kids and teenagers. An older sibling may be someone you know and trust, and could be an awesome place to figure out how you feel about things, but it is still important to also have a trusted adult involved in your healthcare as anyone under 18 can’t help or support you in all parts of decision making.
2. Someone you know well A trusted adult should not be someone you just met or don’t know well. It is important that trusted adults know you and your family. Trusted adults who are not your family should know your family so they can talk to them if that’s necessary. In some cases, this might be an adult who works with you, like a counsellor, peer support worker or case manager. If something happens at school, your teacher knows your family and can let them know. A trusted adult is someone you feel safe with who can help you when you need it. Sometimes you may not have family members that you trust or feel safe with. This is why trusted adults don’t have to be related to you. If you don’t feel safe, comfortable or listened to by a particular person, they should not be one of your trusted adults. It is okay if none of your trusted adults are part of your family, but ideally you would want this adult to know your family or legal guardians. It is a great idea to know who your trusted adults are in different places. It is important that you can easily connect with and contact your trusted adult when you need them. A teacher at your school could be a great trusted adult if you feel like they listen and care about you. Teachers also have legal requirements to keep you safe and supported.

3. Someone who can help you

A trusted adult is someone who is able to help you in a few different ways. Can this person take you to the doctor if you are sick? Can they talk to you and help you feel better when you are stressed or sad? Can they support you to understand information that is shared with you? It is important that at least one of your trusted adults can physically help you, like taking you to see a doctor if needed. At home it may be a parent, while at school it may be a teacher. It is also a good idea to have trusted adults that you can talk to about different things. For example, you may feel uncomfortable talking to some of your trusted adults like your school teacher about your private body parts, but you may feel okay talking about this with your grown ups at home. You may also need to talk to a trusted adult like a teacher about something that happened at school, so they can help you sooner than a trusted adult at home can. If you don’t have a trusted adult that you can think of easily, your teachers at school, a counsellor or therapist, social worker, youth worker or your family doctor can be a great place to start and to ask for help and support around identifying safe and trusted adults.

About Making Health Choices

Sometimes going to the doctor and making choices about our bodies can feel difficult. We may need to ask questions, learn a bit more, talk about our feelings or ask for help from the trusted adults in our lives. You have the right to take the time you need to do these things so that you can feel safe.
It is important to know that sometimes our trusted adults may need to
make choices or tell you what to do such as having a bath, brushing your teeth or going to bed. These things are important to keep you safe, happy and healthy.
It is easy to understand why this might be tricky when you see a doctor, because doctors are there to keep us healthy, but they sometimes only speak to the adults in the room and they may use big words that you don’t understand. This doesn’t mean that you always have to say yes to everything a doctor says, especially if you don’t understand or feel included in the conversation. It is especially important to listen to your body if this makes you feel scared, unsafe, upset or very uncomfortable.
Some of these choices may be scary and uncomfortable, like getting a blood test or a vaccine with a needle, or it could be that the doctor wants to check part of your body. Body checks are called examinations, and sometimes these can feel scary and uncomfortable too, especially if it is an examination of a private body part. A doctor can explain to you why this is important for your health and why they want you to do this. Sometimes doing something unpleasant is the only way to get information that the doctors need
about our bodies to protect and help our bodies from sickness or injury. Understanding why it needs to happen and having your feelings heard may help you relax enough to trust the doctor

If you feel scared or uncomfortable a trusted adult may be able to help you feel brave, safe and ready to do something difficult. A trusted adult should stay with you during an examination. If you are still feeling unsafe, or very scared, and your trusted adults are not able to help you, it is important to know that you don’t have to say yes to anything that the doctor is asking you for. Remember, you should always be allowed to say no because you are in control of your body. It is important that you are listened to, and respected. Doctors should get your permission before they touch you or look underneath your clothing. So that you know why it is important, it is a good idea to ask why they need to do an examination, before you choose to say yes or no. No one else is allowed to say yes or no for you. This permission is called consent. When you are a baby, or too little to talk and understand these things, consent is given by a trusted adult who is legally responsible for you, such as a parent or a guardian. These trusted adults have to follow specific laws to keep you safe and healthy by making good choices. This means they can give consent for you, when you can’t do this yourself. Now that you are older, consent is your choice. Your trusted adults are able to help you and give you advice, but the choice is always yours.

About You

Everyone has human rights, and these are protected by laws that explain all the ways you can’t treat someone badly. These rights are there to protect everyone. Everyone deserves to feel safe and happy, and rights are the rules that exist to protect the things that make us safe and happy. It is important that everyone has the same, fair rights. When you go to the doctor you have the right to choose what happens to your body, such as saying yes or no to whether you want to have a test, take medicine or if you want to leave the appointment early. This is called bodily autonomy. This is a formal way to say that you are in control of your body and the choices about your body are yours to make.

After an Appointment

Looking After Yourself:

If you have been brave and done something you found difficult when at the doctors, it is a good idea to do things that make you feel safe and happy afterwards. Sometimes after being brave you may still feel scared, upset or bad about what has happened. This can also feel like a tummy ache, a headache or even leave you struggling to sleep or eat afterwards. If this happens it means that you might need some
more help, care and support from your trusted adults and loved ones. You may want to do a favourite activity like playing a game or watching a movie, visiting a favourite place, getting a treat like a
special snack or toy, or you may want to spend time with a friend, family member or pet that makes you happy.

Planning for the Future:

For some people talking through what happened and why it made you uncomfortable can help. For others, making a plan for next time can help.
You might think about what choices you, your trusted adult or doctor
would make differently. This can help build and grow your bodily
autonomy skills and help you to understand your rights better.
You might want to write a list of questions to ask your doctor or trusted adult.

Making Your Own Health Choices

There are a few ideas below to help you work out what is best for you. It is important to make sure you have enough time and information before making a choice, so you don’t feel rushed. Before making a health choice about your body, check that:

1. You have a trusted adult with you

You should always have a trusted adult/support person with you at a doctor’s appointment. This could be a parent, guardian or a family member, support worker or peer navigator you know and trust. Even if your doctor is a trusted adult, you still need to have a parent or guardian in the room with you- especially if the doctor wants to give you a body check (examination) a test (like a blood test) or a treatment (like a vaccination or medicine).

2. You have all the information you need

Although you know your own body best, you might need
to find information from different places to help you
make decisions about your health. You could look for information
that tells you why the decision you have to make is important, what
choices you can make, and what may, or may not happen in the future because of those choices. You don’t need to find information alone!
Some places you may get information from might include:

From the Doctor:

Making your own health choices means you have been able to ask the doctor questions about your body and your health. The doctor should be able to tell you why they think a procedure or examination is important, how they will need to touch your body and what other things they need to do.

Making Your Own Health Choices
For example, a doctor may want to do a body check to see how you are growing and developing. If what the doctor is saying or doing is making you feel uncomfortable, you should be able to ask the doctor if there are any other options. You could ask if the doctor can let you know if there is anything else they can do to get the same information. Maybe instead of doing a body check they can ask you questions, get you to draw or write what you know about your body down on paper or have you take a look so you can tell them about your body changes.

From Professionals:

You can also get information from other people you see besides your doctor such as a psychologist, counsellor, therapist or support worker. These are people who work in a professional way to support you and your family. Giving you information and advice is part of their job. They might not have all the answers straight away but can help by looking up some information for you, answering some of your questions and talking to you about your thoughts and feelings. They can also help you to read through and understand any of the information you have found or been given from other people and places. Talking about our thoughts and feelings is a big part of getting information and making decisions. It can be scary to speak to adults who don’t always understand, or don’t take you seriously, so discussing this with trusted adults before or afterwards can be very useful.

From Exploring:

Some books and websites may have good information about what is going on with your body or any decisions you need to make. It might help you to read or watch videos from reliable places. This means information that is true and accurate, such as information provided by the doctor, from official health websites and community organisations. Not all information available is true and can be trusted. It is important to get information with the help of a trusted adult who can help show you what information you can trust.

From Others:

When we get help and support from people who are like us, or who have similar experiences to us, this is called peer support. Peer support is often provided through a community organisation by peer workers, whose job is to share information, provide support, and talk about their experiences. They may also get support from peers themselves. Peer workers may have had to make similar choices or had the same questions as you. They can talk to you about what it was like for them, how they made choices, where they got their information from and much, much more. Peer support is also available for your parents and family from other parents and families. You may also want to ask your trusted adults, family members or friends for help when you are looking for information too.

3. Time and Space

It is important to feel like you have enough time to get the information you want, ask questions, have time to think and to not feel rushed when making choices about your healthcare. You do not need to make a choice right away, or even in the same appointment with the doctor. You may need some time and space away from the doctor’s office and your appointment to think, talk to others and make up your mind about what you want to do. Most things are not urgent which means you can take as much time as you need to make a choice. If something is more urgent, your trusted adults and doctors should explain how long you have to make a choice and why it needs to be made more quickly. No one should make you feel like you have to say yes or no, or like they are making a choice for you, because you are in charge of your body. Example: “I want to ask a few questions because I need more time to think about my choice. Can we come back another time once I have made up my mind?”

BRAIN

When making healthcare choices you can get some help from your BRAIN is an acronym to help you carefully think through your healthcare decisions when it is not an emergency. It can be used by you and your trusted adults as well as your doctors.

BRAIN stands for:
Benefits:
How would the medical treatment, examination or test help you?

Risks:
Are there any risks if you do the medical treatment, examination or test?

Alternatives:
What other options are there?

Intuition:
What do your feelings tell you about the situation?

Nothing:
What happens if you choose to do nothing?

About Information

When making big decisions most people look for information and advice about the choice they need to make or the situation they are in. They may choose to ask a professional who knows a lot about the topic or ask someone who has had to make a similar choice before.
Sometimes people also like to ask someone they trust what choice they would make if they needed to make one. It is important to always ask what the good things about each option are, and if there are any bad or unwanted parts involved, including how this may affect your future choices and health. You can also ask if there are ways any negative parts can be managed or reduced so you still get the benefits from the best available option.

The type of answers and information we get from people will be different and the amount we can trust or listen to this information will vary. It is important to know what information is true and factual, or based on evidence such as scientific information, and which information is based on a person’s opinion, beliefs or values. Information from someone’s opinion, beliefs or values isn’t always accurate and just tells you what they think and feel about something. When listening to this sort of information, it is important to think about how you feel about what they are sharing. For example, do you agree with what they have said, or do you think they are wrong? Do you think you can trust what they say, do they have different values, or are they not being serious about your issue? That doesn’t mean we can’t ask for help or listen to others, but it is good to know and trust how you think and feel about a decision or choice you need to make too. This can be difficult if the person we don’t agree with is an adult, especially someone like a doctor. How you think and feel about a healthcare decision is most important, and sometimes more important than what others think or feel about it. If some information is really important a trusted adult like your parents or doctor should be able to explain it to you in different ways to make sure you have understood it

Responsibility

As you get older you will have more and more responsibility and choice about the things that affect you. By the time you are an adult you will mostly be responsible for all of these things. Until then, making these choices is a chance to be listened to and understood by your trusted adults. Your trusted adults are there to help you as you need or want them to. You are not alone. Sometimes you may need to say your point of view more than once to feel heard or believed. This can make you feel like you are alone, especially if you feel ignored. It is important to keep saying it and telling other trusted adults and people around you until you are listened to.

Making your own health choices

A guide for young people with innate variations of sex characteristics