Advocating for yourself and communicating with people in your life.
When you have endometriosis, suspected or diagnosed, being able to advocate for yourself and communicate with the people in your life about how endometriosis is impacting you is important so that they can have compassion for what you are experiencing and provide support and practical help you may need.
Self-advocacy is the ability to speak up for yourself, about the things that are important to you. It’s about being able to ask for what you need and want. Self-advocacy is making choices and decisions that affect your life and carrying out a plan to help you get there.
Why is self-advocacy important?
Self-advocacy helps to empower you, to speak up for yourself and make decisions about your life.
When you have good self-advocacy skills you can have more control and make the life decisions that are best for you. It can be fundamental to both asserting yourself and exploring yourself. This is important because it is directly linked to building confidence and self-esteem.
Self-advocacy allows you to achieve the things you want from life. Being a self-advocate means you will:
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improve your self-confidence and self-esteem
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gain dignity and self-respect
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have the strength to guard against exploitation and abuse
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have power as an individual with rights.
How do you advocate for yourself?
Advocating is a learned skill which involves figuring out what your own needs are and how you want those needs to be met. It's then about communicating those needs to other people and letting them know how they can meet them.
Advocacy Tip 1
Believe in yourself
You are worth the effort it takes to advocate for yourself and protect your rights. You have the authority to be the expert on your life and nobody else knows how you feel or what you think.
Advocacy Tip 2
Advocacy Tip 3
Decide what you want
Think about what you want and need, and set yourself goals that will help you be clear to others about what it is that you want and need for yourself.
Advocacy Tip 4
Get the facts
Quality information is important to your self-advocacy, so expect to spend time gathering information and facts, to ensure you are confident about what you are talking about or asking for. While the internet can be a useful source of information, make sure you are looking at reputable websites. You can also check with people who have expertise in what you are considering, ask others who have been in a similar situation to you, check references in the library, and contact reputable organisations for information and support.
Advocacy Tip 5
Plan your strategy
Use the information you have gathered and plan a strategy that you feel will work to get what you need and want for yourself. Think of several ways to address the problem. It may be helpful to ask those you trust for suggestions and for feedback on your ideas.
When can you advocate for yourself
Self-advocacy can look like asking your doctor why they are ordering a test, prescribing a medication, or giving a recommendation.
It can also be sending back the plate with tomatoes because you asked for no tomatoes instead of accepting it and picking them out. Or asking for the right-sized blood pressure cuff if the one being used fits poorly.
You can advocate for yourself when you're face-to-face with someone, on the phone, and even in writing to ask for service, request information, present facts, or express your opinion.
Read our tips for advocacy during face-to-face meeting, on the phone, and in writing +
The challenges of self-advocacy
Self-advocacy can be challenging for many different reasons including:
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low self-esteem or a lack of belief in yourself
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a fear of upsetting others or retaliation
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lack of knowledge, information, services and/or support
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other people's response
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cultural barriers
Self-advocay is a learnt behaviour and with practice your confidence will build. Start with small things and with people you feel safe with.
What happens if self-advocacy doesn't work?
There may be times that you are not satisfied with the result of a phone call or meeting, here are some suggestions of things you can do next:
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Ask why the person cannot help you. Write down the answer.
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Ask for another person or agency that may be able to help you.
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If you have been treated unfairly, take action to defend your rights - address the issue directly with the person who has treated you unfairly.
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If necessary, talk to the person's immediate supervisor. Your complaint will seem more credible if you appeal one level at a time.
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Stay calm and respectful and focus on the problem.
Remember you have the authority to be the expert on your life. Nobody else knows how you feel or what you think; you need to tell people if you are not happy or you want something to change. If you are not happy with the way something is done there are things you can do to advocate for change.
Consumer code of rights
When you use a health or disability service in Aotearoa New Zealand, you have the protection of the Code of Health & Disability Services’ Consumers’ Rights and when communicating with health professionals, it can help to understand the Code of Rights as well as the guidance about informed consent from the Medical Council.
Being fully informed and giving informed consent
A key aspect of living with a long-term, chronic condition like endometriosis is basing your treatment decisions on having the correct information about your condition, the treatment and management options available to you, and being told what is being done to you and why (Right 6: The right to be fully informed).
When you are fully informed you can then make decisions about your treatment and management that are right for you and give informed consent (Right 7: The right to make an informed choice and give informed consent).
Under the Code of Rights, health professionals are responsible for ensuring they fully inform you, by communicating and working with you to ensure you understand (Right 5: The right to effective communication).
Consent is an interactive process, not a one-off event. Obtaining consent is a process of shared decision-making where your health professional should be helping you to understand your medical condition and the options for treating (or not treating) your condition.
Consent is more than signing forms and completing paperwork. Your health professional should be taking the time to ask you questions so that they understand what matters to you, and what your concerns, wishes, goals, and values are and taking the time to answer any questions you have.
Your health professional must give you the information you need to help you make a fully-informed decision by:
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Sharing information that is relevant to you, in a way you understand, and allows reasonable time for you to make your decision.
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Thinking about whether there is anything else they can do to make it easier for you to consider the different options and make a fully informed decision.
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Covering options available including those that they may not be able to provide themselves.
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Being open and honest and answering questions accurately.
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Including an explanation of your condition, the options available, and the results of tests and procedures.
Note that similar principles apply to you as the patient:
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You are the expert on your life, your concerns, wishes, goals, and values.
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You are a partner in shared decision-making so have an equal role in communication.
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Be open and honest and answer questions accurately.
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Take the time to ask relevant questions so you understand your condition, the options available, and the results of tests and treatments.
Talking about endometriosis and asking for help
There are many people in your life that you may want to talk to about endometriosis but it can be hard opening up and sharing about how symptoms are impacting you.
What we say, how we say it, and what we mean by it are extremely important, and can be life-changing. Some skills and attributes can be learned to support good communication, and two key skills and attributes are the use of "I" statements, and active listening.
Read more about "I" statements and active listening here +
Asking for help can be hard, but when you have a chronic condition it is so important not only for your physical health but also your mental and emotional wellbeing.
Get our tips for asking for help and getting a yes response here +
Talking to whānau and friends
The people closest to you can sometimes be the hardest to talk to but it is important whānau and friends have a clear understanding of how endometriosis is impacting you. This can include understanding symptoms, treatments, side effects from medications and how these are affecting your life, as well as lifestyle changes you would like to implement.
Your whānau and friends may have questions about endometriosis - to answer them, educate yourself first about endometriosis. You may want to look at the information on our website or have our information guides available to refer to during your conversation.
Start by choosing the right time and place to talk to your family or friend, a place where you can be alone and without any distractions.
Start by explaining what endometriosis is and advise them of reputable websites they can look at for their own research and information.
If you are comfortable, share your symptoms, treatment, and management plan.
Listen to your family and friends as they express their emotions, worries, or questions they may have. Endometriosis can have an emotional and mental impact on those close to you.
Endometriosis, you and your partner
Endometriosis can impact your relationship with your partner in many different ways. Every person is affected differently by endometriosis, but painful sex (known as dyspareunia) is a common symptom and experience, affecting 60% of those with endometriosis. Painful intercourse can disrupt your sex life, resulting in a loss of intimacy, and can cause a strain on your relationship.
Read more about endometriosis and your sex life here +
40% of people with endometriosis also experience fertility problems which can be very difficult and distressing for both partners and can cause strain on the relationship. You may find that your plans for having children are affected in many ways, for example, some couples might try to have children earlier than they would otherwise have done due to endometriosis. Some couples may decide to explore interventions such as IVF, or other options such as adoption or fostering, or may choose not to have children.
Learn more about endometriosis and fertility here +
If endometriosis is new to your partner or new to you, your partner will likely have questions about how endometriosis is impacting you and your relationship. To answer them accurately educate yourself first on the condition. You may also want to discuss with your doctor or specialist whether your endometriosis could affect your fertility.
Choose the right time to have the conversation with your partner. Find a time when you can be alone and without any distractions.
If you are comfortable about sharing your symptoms, and frequency of these, this can give an understanding of what you experience regularly. Be honest with your partner about your pain, and what can trigger your endometriosis symptoms. Also, consider sharing your treatment and management plan.
Be supportive and intently listen to your partner as they express their emotions, worries, or any questions they may have.
Everyone copes in different ways but some things can help you and your partner to better cope with the impact of endometriosis on your relationship such as extending kindness to yourself and your partner.
Find out how communicating effectively with your partner can help you both cope better +
Endometriosis and your employment
Endometriosis can impact your ability to work, if you are already in employment a good employer will be mindful of staff wellbeing. To ensure you are well and productive in your work, it may be helpful to talk to your employer about your endometriosis.
If you are applying for a new job and have endometriosis it can help to understand employment law and best practice.
Learn about your rights and responsibilities here when applying for a job +
Endometriosis and study
It can be hard to know what to share with your teachers and place of education, but to make the most of your studies it’s important to explain the impact of endometriosis and the support you need.
You may want to ask your doctor or endometriosis specialist to write your place of education a letter explaining how the condition can affect you and your life and use this to guide your conversation.
You may also want to discuss what may happen when you are experiencing symptoms such as needing the toilet and rest breaks, being able to heat a wheat pack, having access to medical care, taking medication on a timely basis, and having opportunities to study at home.
There are going to be some days that you feel unable to attend your place of education due to pelvic pain, fatigue, or other endometriosis symptoms. Establish with your parent/guardian the criteria for staying home and what is tolerable and intolerable for you. Make sure you are getting good quality sleep and getting up early enough to get ready for school, have a sustaining breakfast, and take your medication.
Here are some other ideas to support you and your studying:
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A home tutor may help you keep up with missed work and ensure you are not overwhelmed.
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Keep an extra set of books at home to reduce your daily backpack load.
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If the distance between rooms is impacting, request extra time to get to class.
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Adjust your schedule to give you study or rest periods during the day and still meet academic requirements.
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Connect with Disability Support, Stress Counselling or other services at your place of study. They can help to co-ordinate support across your studies and help with your self-advocacy..
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For Secondary Studies, Te Kura offer quality distance education through to NCEA level 3. Find out more on their website: https://www.tekura.school.nz/
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Consider completing studies on a part-time basis: it might be better to complete studies over a longer period than to have to drop out and risk not completing them at all.
When people in your life try to 'fix' things
It's natural for your whānau, friends, or partner to try and find practical solutions and want to 'fix' things for you. You may talk about changing treatment, surgical options, hormonal therapies, altering your diet, or changing work patterns.
However, practical solutions are not always possible or effective, in which case expressing emotions and changing the way you all think and feel about endometriosis can be very helpful. This might include things like:
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Focusing on endometriosis as something to be managed rather than cured.
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Acknowledging and addressing the ways the condition affects you and the person in your life.
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Allowing yourself and the person to express and talk through negative emotions.
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Trying to feel more optimistic about the future or conversely trying to be more accepting of the situation and a new way of life.
It may help to let the person know that you feel that they are trying to 'fix' things for you and that you appreciate that this comes from a place of care and love but it isn't helping as these practical solutions aren't possible or effective. Sometimes even saying "I just want to talk, you don't need to 'fix' anything, just listen" can be a great way of starting conversations.
You can also try letting them know of ways they can support you instead.
You can get ideas here of how the people in your life can support you here +
Instead of saying "I'm fine"
We're constantly asked "how are you" in our lives, and often our response is "I'm fine" but when you have endometriosis or a chronic illness you often are not fine so how do you answer "how are you"? Here are some things you can say instead of "I'm fine".
This gives people a choice in when you share with them vs. 'emotional dumping'.
You also don't need to say anything and change the subject to something you feel comfortable discussing. It's normal to not feel like sharing, answering questions, or be comfortable responding to certain people.
You can set conversational boundaries without being rude. Change the subject to something else that you feel more comfortable discussing, or ask the other person something about them.
Join us in our mission to empower people with endometriosis and improve the lives of thousands in Aotearoa New Zealand
We rely on the support of our community to provide the resources and support that people with endometriosis need. There are many ways to get involved and make a difference, from making a donation to volunteering your time.
