Coping with cancer

After a cancer diagnosis and throughout treatment, it’s common to feel a range of strong emotions including anger, fear, anxiety, sadness, grief and resentment. Research shows that LGBTQI+ people have a greater risk of mental and emotional distress after a cancer diagnosis for several reasons. You may feel anxious about coming out to health professionals, fear being discriminated against because of your sexual orientation, gender or intersex variation, or worry about how cancer and its treatment will affect your identity or relationships.

Some people have faced stigma and shame for being LGBTQI+, and may blame themselves for getting cancer or feel judged by others. It’s natural to feel vulnerable while having cancer treatment. If you are distressed, anxious or depressed, appropriate support and information is available.

Dealing with feelings of sadness

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you  pleasure, you may be experiencing depression. This is quite common after a cancer diagnosis.

Everyone has their own way of coping with their emotions. There is no right or wrong way. It is important to give yourself, and those around you, time to deal with the strong emotions that cancer can cause. For support, call Cancer Council 13 11 20. People aged 12–25 can also call Canteen on
1800 835 932.

If you think you may be depressed, talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council SA also runs a free counselling program.

To connect with LGBTI peer support, visit QLife or call them on 1800 184 527. For information about coping with depression and anxiety, visit Beyond Blue or call them on 1300 22 4636. For 24-hour crisis support, visit Lifeline or call them on 13 11 14.

Download our booklet ‘Emotions and Cancer’

As well as their sexual orientation, gender and sex characteristics, each person is shaped by their age, race, language, culture, spirituality, disability, education, relationships and financial situation, plus where they live and any previous experiences with the health system.

These factors can overlap to affect health and wellbeing, as well as cancer care. Aside from discrimination for being LGBTQI+, some people may also have had to deal with ageism, sexism, racism or disability discrimination. Other people may find it difficult to merge different aspects of their identity (e.g. being young, trans) or work out how to communicate their needs to health services.

Some LGBTQI+ communities may have specific experiences that affect their health and wellbeing. Examples include:

• transgender and gender-diverse people – are less likely to access mainstream services because of transphobic attitudes, often have past experiences of misgendering and difficulties getting gender-affirming treatment
• intersex people – may have past negative experiences with health professionals, including prior surgery to make them “fit” society’s idea of what it is to be male or female, having had medically unnecessary surgery as a child without their consent, or dealing with health professionals’ lack of  knowledge about intersex variations
• young people – may have higher rates of distress because of being bullied at school, rejected by family members, or still being in the process of coming out
• older people – would have likely grown up at a time when being homosexual was considered an illness or a crime and may have experienced  discrimination, family rejection and social isolation
• Aboriginal and Torres Strait Islander people – brother boys or sister girls may face added discrimination from being both LGBTQI+ and Aboriginal or Torres Strait Islander (from the wider community, their own community, or both)
• culturally and linguistically diverse people and refugees – may face discrimination from within their community as well as the LGBTQI+ communities, leading to feelings of stigma and shame
• people with disability – may face discrimination from being both LGBTQI+ and a person with disability, which may lead to difficulties accessing  services and having their sexual orientation, sexual needs or gender recognised
• people living in regional or rural areas – may be more socially isolated, less supported to come out, and have less access to LGBTQI+ specific services.

Some LGBTQI+ people have experienced discrimination because of their sexual orientation, gender or intersex variation, and fear being discriminated against during their cancer care.

Discrimination can take many forms, such as inappropriate comments, receiving a lesser standard of care, and excluding your partner/s from  discussions or your hospital room. These types of behaviour can affect your physical and mental health and are against the law in Australia.

At the time of the cancer diagnosis, you may or may not have come out as LGBTQI+, or you may be out to some of your friends, family and contacts  but not others. Some people want to be out to their cancer care team, others feel it is not important, and some may not have a choice because information about their body is already in their medical records.

Choosing to come out to your cancer care team may make it easier for you to discuss your needs, preferences and values, and can help ensure you receive culturally safe care. It also means that your treatment team can recommend the most appropriate treatments for you, give you relevant information and connect you to LGBTQI+ support groups.

Whether you feel safe coming out to your cancer care team may depend on whether you’re still questioning or exploring your identity, your past  experiences of discrimination and prejudice, and whether you have been mistreated by other people after disclosing your sexual orientation, gender or intersex variation. It may also be influenced by how you felt when you came out to family and friends.

The reality of having cancer treatment is that you are asked to repeat your cancer experience multiple times with multiple doctors. You also need to decide whether to share your sexual orientation, gender or intersex variation with each health professional you meet. Coming out is a process, and it’s okay to come out slowly and when you feel ready. This can be stressful and emotionally draining, and you may be worried about how your health  professionals will react.

Benefits of coming out

• You don’t have to hide who you are and can be yourself.
• You may be more satisfied with your cancer care and feel that it better meets your needs.
• Your partner/s (if you have them) are more likely to be recognised and included.
• It makes it easier to talk about how treatment affects sex and intimacy.
• Your treatment team can tailor information for you.
• You will be less likely to have your cancer overlooked.

Fears about coming out

• Fear of negative reactions and being made to feel unsafe.
• Worry about receiving discriminatory or a lesser standard of care.
• Anxiety about having to come out multiple times.
• Fear of being alienated from your family at a time of need.
• Concerns about potential breach of confidentiality.

When you may not have a choice

Sometimes it may be medically necessary to share information with your cancer care team, so they have the information they need to make a  diagnosis or recommend treatment. This could include which reproductive organs you were born with, whether you have an intersex variation, or whether any sex characteristics have changed over your life.

People with an intersex variation may not have a choice about how much to reveal to their cancer care team if these details are listed on their medical records, and you may find this upsetting. However, you may want to share your preferred terms for body parts and discuss how your intersex variation will impact your cancer care.

You can work with your doctors and treatment team to ensure your information is shared and discussed with respect, and that you are not outed or discriminated against.

What if I’m not out?

You may not be out to all your family and friends, and don’t want your cancer care team to share personal information with others. If you decide to come out to your cancer care team, they are legally required to keep your health information private and generally can’t share it without your  permission. If you are worried about being outed, it can be helpful to let your cancer care team know.

How to come out to your health professionals

You deserve to be treated with respect by all the health professionals who look after you. If you find the thought of disclosing your sexual orientation, gender or intersex variation stressful, some of the following tips and suggestions may be helpful to you.

Decide beforehand – Before your appointment, think about how much information you want to share and who you want to share it with. Prepare  some notes so you don’t forget anything.

Practise – You may feel more confident talking to your health professional if you practise what you want to say with your partner/s, family and  friends.

Have someone with you – Consider having a support person, such as a partner, family member or close friend, with you to help with the discussion  and to provide support. They can also help you debrief and provide assistance with making a complaint if you receive a negative reaction. If you don’t feel safe, you can choose to leave the room.

Do it in writing – If you’re not a confident speaker, write down what you want to say to your health professionals. You can also ask your GP to include information about you in their referral letter to other specialists, such as your sexual orientation, intersex variation, pronouns or preferred name.

Ask for privacy – If you’re in a ward or open area, ask to speak in a quiet, private place where you won’t be overheard.

Communicate your pronouns – Consider including your pronouns when you introduce yourself. You could say “My name is Parker Jones and I use  they/them pronouns”. If you are misgendered, you could provide a simple correction such as “Oh, I use they/them pronouns, thanks.” Wearing a pronoun badge is another way to remind people of your pronouns.

Introduce your partner/s – If you have a partner or partners, encourage them to come to your appointments. This lets your doctor know who’s  important to you. Before your first appointment, it’s okay to phone or email your doctor to find out if they are LGBTQI+ friendly. You could say, “My wife will attend the appointment with me, we are both women, just so you know.”

Communication aids  – You can use the Genders, Bodies and Relationships Passport to make telling your health professionals about your gender,  body and relationships easier. Visit LGBTIQ+ Health Australia to order a copy.

Seek support – Visit QLife, a national peer support and referral service for LGBTI people. You can also call them on 1800 184 527.