Heather Guidone wants you to know that self-advocacy is directly akin to self-empowerment and we owe it to ourselves to be on top of our health priorities. Improved health literacy, making educated and informed decisions about our health, taking control of our choices and retaining our sense of agency and bodily autonomy are all empowering and key to our health outcomes.
Recently I listened to Heather Guidone on the new DEARG podcast hosted by Kathleen King, an endometriosis advocate, scientist and acupuncturist. I felt impacted listening to Heather talk about how important self-advocacy is for women experiencing all types of health conditions and the vital and empowering impact self-advocacy has on women including the systematic effect on not only the healthcare system but also on society.
Her message resonated with me on several levels, and at the same time, I consider that as an Irish woman rarely have we been encouraged at any age or stage in life to confidently be expressive and self-advocate for ourselves. Quite the opposite in fact!
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Instead, we come from a culture of minimising, dismissing and disregarding the voices and opinions of women. Quotes you might recognise which emphasise my viewpoint are ‘put up and shut up‘, ‘do as you are told‘, ‘don’t rock the boat‘ and finally a classic from the seventies ‘girls should be seen and not heard‘. If anyone can make you feel confident about the power of self-advocacy, it’s this experienced and outspoken endometriosis and self-advocacy advocate.
She expressed a strong message that women in Irish society don’t hear enough of which struck a chord with me and that is this – you deserve to be a self-advocate, you have permission to be your own self-advocate and you have a right to practice self-advocacy – now get out there an be your own self-advocate.
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I contacted Heather who is based in Atlanta, USA and shared my gratitude for her powerful message and she very kindly and quickly agreed to contribute to my women’s health blog to talk about the power of self-advocacy and how to do it!
Inclusion is important!
You will notice that Heather uses the word womxn, which is an increasingly common word that promotes inclusivity and gender-inclusive language which are important to Heather. The term womxn is used to be inclusive of all women, trans and non-binary women.
About Heather Guidone (She/her)
Heather Guidone, BCPA (she/her) is the Program Director of The Center for Endometriosis Care and an internationally renowned Board-certified healthcare Advocate and disease educator. She has focused on ‘bench to beltway to bedside’ efforts in endometriosis research facilitation, legislation and policy reform, education, patient-centred care and more for over thirty years, but importantly, is someone who personally struggled with the disease as well.
Her lived experiences bring a unique perspective to her professional works and fuel her continued passion to effect change in the way endometriosis is researched, treated, and publicly perceived. Heather volunteers her time to several collaborative endeavours, serving as an Advisor, Editorial Board Member, Appointee and more for various Journals, Legislative Working Groups, Councils, Committees, Special Interest Groups and others.
“I thought if I could use my experiences and lessons learned to help empower others, it would be a way of channelling it all into something that was ultimately for good…using my passion to empower both myself and others, because I had to find something meaningful in all that I had gone through.”
Heather continues to present on the endometriosis disease internationally and has contributed to countless books, articles, podcasts and publications on endometriosis and related health concerns. Her priority focus remains on ensuring stakeholder representation in all places where decisions about endometriosis are being made in order to improve empowerment, access, and outcomes for future generations.
How long have you been advocating for women and how did that come about?
I began the advocacy journey in the late 1980s, really as a self-serving measure because I had no choice but to self-advocate amid my own flawed care. I embarked on the advocate road in earnest in the early 90s and never looked back. It honestly started as many of our journeys do – seeing the broken system (is it broken…or did they build it that way??) through a personal lens lights a fire to make changes for the better for everyone, at least, it did for me.
What I went through over the years with endometriosis and later, other health concerns, was transformative – and devastating, at times – and prompted me to reevaluate my priorities and direction, really to embrace a sense of greater purpose.
“Believe yourself and know that you know your body best. If you think something is ‘off’ or ‘wrong,’ it probably is and you deserve to be seen, heard and helped.”
I thought if I could use my experiences and lessons learned to help empower others, it would be a way of channelling it all into something that was ultimately for good…using my passion to empower both myself and others, because I had to find something meaningful in all that I had gone through.
I was genuinely interested in finding ways to improve and elevate our community platform through improved understanding, support, disease education, and positive connections. There’s enough negativity associated with this already – I wanted my experiences to serve as a powerful catalyst to join the fight for positive change and more advocacy for the disease.
And slowly my world grew around that mission, professionally and personally. So here I am, more than 30 years later, with a lot of gratitude for the shoulders of giants I was privileged to stand on along the way and the deep connections I am fortunate to have today with so many like-minded champions, all doing incredible work themselves.
What is self-advocacy all about?
At its most basic root, self-advocacy is about expressing your needs and concerns to ensure that your voice is heard and your rights are respected.
You have to speak up. Speak your truth even if your voice shakes, as the saying goes. I have taught whole courses on self-advocacy in endometriosis. To sum it all up, self-advocacy is really about being educated on the disease – or any other condition you may be dealing with – and establishing clear communication from the outset.
“Let womxn define their own standards of beauty and sexuality!“
In the medical setting, it can be hard to advocate for oneself, especially in situations where the power balance is already off before you even walk in the door – but advocating for yourself as hard as you would for someone else is important.
Of course, remember that self-advocacy is an ongoing process. We are always learning and growing on our journeys and we can use the tools we acquire along the way to effectively self-advocate every day, both in and out of the healthcare setting – establishing boundaries, educating others around us in our daily lives, raising awareness, being active in our communities, and more.
How does self-advocacy empower women with health concerns from a health perspective and a confidence mindset?
Womxn’s health is traditionally undervalued, ignored, steeped in misogyny and taboo and stigma, even today, so it’s no surprise that the research is underfunded, concerns that predominately impact that born female are ignored or trivialized and that gender bias persists in every aspect of diagnosis, access to care, and treatments.
“Empowered womxn who recognize their self-worth, and who have learned that self-care is not selfish but essential, are the ones who are reclaiming their time and health and leading lives of strength and purpose.”
This is particularly true of diseases and conditions inside the traditionally female-identified space, like endometriosis. Too many people still think it’s just a menstrual disease, merely a bad period, so all the stigmas continue to be attached in that way, which ultimately impacts care. But the disease isn’t simply killer cramps and it’s been found in every organ system, in menstruators and non-menstruators alike, including some individuals assigned male at birth, after removal of the uterus and in those who have never menstruated for various reasons.
So as the saying goes, if not us, then who?
If not now, then when?
It’s up to us to fix the system (which again, I suspect is not broken but functioning exactly as it was built to).
Self-advocacy is directly akin to self-empowerment. And we owe it to ourselves to be on top of our health priorities. Improved health literacy, making educated and informed decisions about our health, taking control of our choices and retaining our sense of agency and bodily autonomy are all empowering and key to our health outcomes.
Understanding our disease and health conditions, knowing our bodies, and communicating our wishes and requests (or demands) efficiently and effectively, making sure we are heard. These things all ensure we are receiving the best care we can.
Breaking down stigmas and taboos, and debunking myths is key for challenging outdated and flawed societal norms. This improves access to care and also validates our own lived experiences.
When we feel heard and understood – and valued – it’s not only empowerment but also improves care-seeking and outcomes.
Self-advocacy matters for everyone, especially those dealing with chronic diseases like endometriosis – which is not a reproductive or menstrual or truly gynecologic disease, as it can impact every organ system and is a bodywide disease. By ensuring we’ve given ourselves the knowledge, mindset and resources needed to take control of our health with confidence.
Let’s talk self-acceptance! Tell us what you want womxn to know about the power of embracing their sexuality and loving our bodies.
Honestly, it is beneficial from every angle, self-confidence, body positivity, mental health, sexual health and satisfaction, empowering relationships, everything.
It’s also a form of resistance against societal pressures which can be so damaging.
Let womxn define their own standards of beauty and sexuality! It isn’t about just physical, but absolutely extends to our mental, emotional, and relational health and well-being. A sense of self-acceptance is critical to overall life satisfaction. Let womxn live authentically!
What have you learned about yourself and womxn in your journey so far that you would like to share?
Author Hannah Coombes once wrote, “Self-care is particularly important for women and other marginalized groups who have to operate in systems that discriminate based on gender, race, class, sexuality etc.” Her statement I think underscores the perfect storm of so many elements preventing womxn from getting care and being taken seriously in our health journeys.
What I’ve learned along the way, however, is that empowered womxn who recognize their self-worth, and who have learned that self-care is not selfish but essential, are the ones who are reclaiming their time and health and leading lives of strength and purpose. And so we must continue to unapologetically embrace our resilience and serve as the architects of our own journeys – whatever that journey looks like to each of us individually.
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