Promoting Empowerment and Inclusivity in the QENDO Community
By Dannielle Stewart
What is the biggest barrier to quality care that you face as a patient?
The answer to that question is different for almost everyone in the endometriosis, adenomyosis, PCOS and infertility community. That’s because our community is a melting pot of ages, cultures, sexual orientations, gender identities, ethnicities and nationalities, and that’s what makes our community special. At QENDO our community is one where everyone is welcome, where everyone’s voice will be heard, and where everyone’s unique story is celebrated. The chronic illnesses that come under QENDO’s umbrella are not homogenous, and neither is our community, there is no such thing as a typical patient, because these diseases affect so many different people.
Our community stretches across the many avenues of support we offer at QENDO. Our website and support team provides a space to connect with others who may be going through similar symptoms and experiences, as well as providing a much needed connection to healthcare providers. Our Facebook regional groups allow you to talk with people near you and hear about local events that can provide you with support and education. Our support line is accessible worldwide via 1800 ASK QENDO , so that no matter where you are, you can seek one on one support with our trained support workers. Our QENDO and Co space provides a safe space for those members of our community who identify as LGBTIQA+, who face unique challenges in our healthcare system. Our new QENDO app allows you to track your symptoms, mood, energy levels, activities, diet and a myriad of other factors that can impact your chronic illness, perhaps even allowing you to discover triggers you didn’t even realise were having an effect on your health and wellbeing.
Our QENDO community aims to raise awareness, provide education, and be part of long term changes and solutions to problems facing those affected by endometriosis, adenomyosis, PCOS, and infertility, including their partners, friends and families. Through education and support for those suffering from chronic illness, we empower those affected to take control of their own health, find their voice, and advocate for themselves and others. There is power and bravery, as well as vulnerability, in sharing one’s story, and it can help others to tell theirs. By shining a light on the many and varied voices within the chronic illness community, we carve out a space for ourselves in which we can demand to be heard, and press for change. As a community, as an organisation, we are always learning, and we have always made changes based on community feedback - our community, that’s you, are why we do what we do, so how can we support you better?
So what are the biggest challenges facing those in our community? How can we overcome them and be part of positive change? Inclusion and making space within our community continues to be an area for improvement. Endometriosis in particular is often painted in the media as a condition affecting white women, when we know that endometriosis does not discriminate and can occur in any ethnicity, and any person with a uterus, but can still have a debilitating impact on those who have had a hysterectomy or oophorectomy - neither of these are a cure for endometriosis. There is a need to recognise all of these voices in our community, and listen to their stories, because chronic illness doesn’t affect just one group of people.
So what are some of the biggest barriers to quality endometriosis, adenomyosis, and PCOS care for those in the LGBTIQA+ community?
We asked those within this community to talk about some of the barriers they face, the assumptions they encounter, and the effect of this on their experience in the healthcare system. These are some of the biggest issues identified:
Presuming gender and sexuality
Heterocentric model of medicine and health
Finding practitioners who create a safe space and use inclusive language
Assumption of penetrative sex for those engaged in a sexual relationship
Expense associated with “shopping” for healthcare professionals who are inclusive
Many people commented that the presumption of gender was not only uncomfortable, or alienating, but in some cases a genuine threat to their mental and physical health. When asked what was the biggest barrier to seeking healthcare advice “fear of being judged and/or treated differently because of my sexuality” was identified by several individuals. Another stated that having their sexuality presumed by medical professionals made them feel “not normal”. For those who identify as trans, non-binary or gender fluid, the assumption of their gender was similarly isolating, and a factor that affected their decision to seek medical advice over any number of issues, not only their chronic disease. As one person commented, “finding medical professionals that acknowledge gender diversity [is my biggest barrier to quality care], this endangers my life”.
Many healthcare users also commented on the underlying heterocentricity of the healthcare system, and that most healthcare providers, hospitals and clinics make presumptions that people are cis and straight, and that those who identify differently have to challenge these assumptions to move within the healthcare system. Whether it’s the assumption that one is in a heterosexual relationship when discussing sex and partners, or that someone who identifies as female is engaged in penetrative sex, these assumptions can frustrating, damaging, and interfere with developing therepeutic relationships so essential to receiving quality care for chronic illness. Several community members identified the assumption that they were having penetrative sex, or that their body needed healing in a way that facilitated penetrative sex was a major barrier to care with both doctors and physiotherapists. “People assume that I don’t experience the ‘same’ pain [as others with endometriosis] because I sleep with women not men”, one person commented. Another stated “doctors and physios automatically assume that you need healing to allow for penetrative sex”. Many community members felt this assumption was a block to receiving the care they needed after a chronic illness diagnosis, and prevented them from fully engaging in therapies others have found useful because they didn’t feel comfortable in that space.
Overall most of those asked expressed frustration with finding healthcare providers who use inclusive language, acknowledge gender diversity and create a safe space. This is a challenge that adds to the emotional labour of having a chronic illness. “Heterocentric conversations are very uncomfortable for me, as a lesbian”, one individual shared. Ash P, a QENDO community member with PCOS said that their two major barriers to quality care were an interaction between cost and gender awareness. “It’s so hard finding the money to see a gyno and then finding one who will respect my identity and pronouns and not use alienating language about my body,” they said. Many people with a chronic illness comment on the difficulty in finding a provider that understands their condition and listens to their experiences, for those in the LGBTIQA + community, there is a further challenge of finding a healthcare provider who is inclusive, and that can be an emotionally laborious and expensive undertaking.
Understanding these barriers within the community is the first step to making our community more inclusive and challenging these assumptions, and educating ourselves and the healthcare community about better supporting everyone affected by endometriosis, adenomyosis and PCOS.
So what support can you access as an LGBTIQA+ individual within the QENDO community that helps challenge these barriers to care, and promotes all important self care?
QENDO & Co Facebook Group
Join a private, safe space facilitated by our QENDO and Co Facilitator and non-binary person Jess Tilley.
Share stories with others in this community, share resources, and practitioners who positively contribute to your chronic illness experience
QENDO Referral Lists
Our support team listens to feedback from the community to help identify practices and practitioners who are inclusive, sex positive, and acknowledge gender diversity - and this is helpfully identified on our directory of practitioners to help reduce the stress associated with finding the right person for you.
Your feedback to our support team at supportcoordinator@qendo.org.au helps us identify new practitioners, and annotate existing ones who you have found to be LGBTIQA+ friendly.
You can find a local referral list at qendo.org.au/membership, membership is free and provides you with access to a myriad of resources to help you understand and manage your chronic illness
QENDO App
Our new app is for anyone affected by endo, adeno, PCOS, infertility and pelvic pain, with room to add other chronic illnesses you may also be living with. The app is an important communication tool with your healthcare team, and a tool for you to better understand your condition and all it encompasses. Gender diversity is acknowledged and you can customise your experience by adding symptoms, triggers, and activities that are relevant to you.
Tracking your symptoms and sharing your findings with your healthcare team can help them to better understand your unique experience, and facilitate better management strategies. As many members of the community have found that providers understanding their unique experience of their illness is a huge barrier to quality care, the QENDO App can be a helpful tool to share that experience.
What can you track? Almost anything you can think of! It’s not just pain and bleeding - that’s not the only experience of someone with endo or adeno. Here is a non-exhaustive list of the symptoms you can track with QENDO, with emphasis on both physical and mental health.
In depth pain assessment
Bleeding
Discharge
Urinary symptoms
Bowel symptoms
Painful sex (allowing space to track many different facets of sex and intimacy)
Stress
Energy Levels
Bloating
Cramping
Headaches
Nausea
Skin
Concentration levels
Additionally, you can track activities to identify triggers for symptoms, stressors, and symptom alleviators. Knowledge is power, and knowing more about how your condition affects you allows you to break down communication barriers, and facilitate conversations about your unique experience. You could track, for example, pain, nausea and headaches in the symptoms category, and then work, exercise and social outings on the activities side and generate a report that shows you visually what’s going on. For example, you might find that a consistently low pain score leads to an increased tracking of social activities, whereas an increase in work hours leads to an increase in tracking headaches - you’ve now identified a potential trigger that you can manage!
Types of activities that you can track include:
Work
Study
Exercise
Sexual Activity
Medical appointments
Social outings
Therapies such as physio, osteo, exercise physiology
Relaxation
Surgery
Pregnancy
Sleep
Finally, the app is also a source of information and resources for you, your family and your partner to help you better understand how you can get the most out of managing your condition. These resources are not only QENDO resources, but reputable community organisations that can help with your needs.
Support Line
You can always reach out to our 24/7 support line 1800 ASK QENDO, where you can leave a message and the on call support worker will get back to you ASAP. There is an on call support worker available every day of the year, including public holidays. Support workers are trained to provide you with an understanding, non-judgemental ear, and empower you through support and strategies to advocate for your own health. Your support worker is invested in your success! The support line is for everyone - chronic illness warriors, partners, friends, family and even employers, anyone who is affected by endometriosis, adenomyosis, PCOS, infertility or pelvic pain.
You are not alone, the experience of chronic illness is not a burden to carry by yourself - share it with your community and find strength and empowerment in your fellow warriors.
The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.
