Endometriosis: How to be a Fearless Self-Advocate

In part II of Endometriosis and the Power of Self-Advocacy, three experienced long-term endometriosis advocates share their insights into how best to advocate for yourself when it comes to your healthcare. Heather Guidone, Kathleen King and Orla O’Connor provide simple and effective tips on being a fearless, prepared and persistent self-advocate – a competency I believe all women deserve to know and personify.

Now, if you read my last article speak up and speak your truth with Heather Guidone about the power of self-advocacy you will know that I was moved to listen to Heather Guidone talking with Kathleen King on the DEARG podcast. Ireland’s only dedicated endometriosis and adenomyosis podcast. She gave us her views on advocating for ourselves, how and why it empowers womxn and why we need to define our own standards of beauty and sexuality.

In case you are in a rush reading this article, I will sum up this essential advice in one short sentence. Make it your mantra even – Be fearless, be persistent, be prepared and trust yourself.

You might like to read...[25 Ways to be a Strong Health Self-Advocate]

Self-advocacy does not have an expiration date, the same way management of endometriosis disease does not simply end with treatment. The challenges and needs of those living with endometriosis and any chronic condition change throughout life and self-advocacy is a powerful resource. As Heather reminded us, ‘Self-advocacy is an ongoing process.‘ Conditions such as Endometriosis, adenomyosis, PCOS and pelvic pain affect women and couples in many diverse ways which I discuss with Kathleen as a psychosexual therapist and from personal experience.

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As a woman living with endo post-surgery, I understand the challenges facing women in Ireland when it comes to diagnosis, assessment, treatment and surgery for the disease. I failed miserably with a capital ‘F’ at being a self-advocate! It’s a fact. I did what I could but without awareness of these simple self-advocacy tips that could have made life easier. Like many women, I left medical appointments with no signposting and feeling more powerless than when I walked in the door.

These are skills every woman should learn and know for any health concerns. Your pain is real. Period. The physical and psychological impact of living with any overlooked, dismissed or misdiagnosed chronic conditions wears us down on every single level. This is one of the many reasons self-advocacy skills are so important!

We trust our health professionals to take us seriously, believe our symptoms, investigate further and make our medical care a priority. Still, when it comes to endometriosis symptoms, all the research highlights the simple fact that they don’t. Take a listen to my endo story on the DEARG podcast with Kathleen King.

Self-advocacy is the ability to communicate what your needs are, being involved in your treatment plan and understand your rights within the law. Researching is incredibly important, but, the source is equally important.‘ Orla O’Connor

Awareness of the condition of Endometriosis has grown for several reasons. Largely thanks to advocates speaking out, awareness campaigns such as EndoMarch, the incredibly supportive Endo community, social media, and tireless advocates like Kathleen King bringing expert information, conversation and perspectives onto her podcast with guests such as Orla O’Connor and Heather Guidone waving the flag for womxn’s health.

You can learn how to be a fearless self-advocate with these simple tips to make your voice heard.

Heather, what do you want women to know about learning to be a strong self-advocate?

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.

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Building on effective communication helps establish a great rapport with your healthcare practitioner. But, don’t be afraid to ever get a second, third, fourth, fifth opinion on recommendations being made to you about any treatments -or lack thereof.

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, these things are all empowering and key to our health outcomes.

Heather, tell us three gold nugget pieces of advice when it comes to self-advocacy and the message that you bring into your taught courses on self-advocacy.

First, believe in 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.

Secondly, education is critical. Knowing about the disease or condition, what options you have for treatment, how to access the care you need, what goals – and realistic expectations – you should have towards outcomes, what resources are available to you and more – all of these things can be critical in terms of seeking, obtaining and receiving ongoing care, validation and support.

I failed miserably with a capital ‘F’ at being a self-advocate! It’s a fact. I did what I could but without awareness of these simple self-advocacy tips that could have made life easier. Like many women, I left medical appointments with no signposting and feeling more powerless than when I walked in the door.

Third and maybe most importantly, be persistent! Don’t be discouraged by setbacks…adjust your approach (and find a new doctor, as the case may warrant). As we say in professional healthcare advocacy, it is ‘an evolutionary process.’

How to be a fearless self-advocate:

Here are Heather’s tips on how to be a self-advocate and prepare for every appointment.

  • Be prepared! As far as the doctor’s office, we always tell our patients, and this is true for anyone, to prepare in advance. 
  • Write your questions down.
  • Bring a list of your symptoms. 
  • Note any concerns you’d like to address about any therapies you’re on.
  • Bring your records 
  • Ask for any clarification about your case that may be needed during the appointment. 
  • Share your preferences and needs. It’s really important that factors like your lifestyle, work, home life, personal beliefs and other aspects that could impact your care are being addressed, patient-centric, culturally sensitive care is critical. 
  • If you have concerns, write them down and voice them! 
  • If you feel you need to bring a loved one, friend or even a professional advocate – do that. 
  • Familiarise yourself with your rights as a patient, including the right to information, informed consent, and the ability to refuse treatments. 
  • Know when it’s time to change doctors. Not every practitioner is a great match – and that’s ok. It’s fine to move on as needed. Consider are they a high supporter in your journey, for example, do they agree with your treatment goals and/or will refer you to any specialists who are best suited to provide additional care? Or low in support i.e. may not agree with your treatment wishes or journey, but may still refer you out upon request as needed. Or, no support (misinformed about the disease, only offers single treatment option, no referrals, etc.)? 
  • Do provide feedback on the appointment – everything is a teachable moment and may help you as well as others going forward. 
  • And finally, disease education is key. Learn everything you can about the disease from reputable, trusted, evidence-based sources.

Orla O’Connor, a Cork-based endometriosis advocate says that ‘self-advocacy is the ability to communicate what your needs are, being involved in your treatment plan and understand your rights within the law. Researching is incredibly important, but, the source is equally important. My top three sources of information right now is the The DEARG podcast, The Centre for Endometriosis Care and Nancy’s Nook.

I want women to know the importance of learning to trust yourself, you know your body better than anyone else. Always, always ask questions. Be prepared with a list of questions for appointments. Self-advocacy, particularly for endometriosis patients is of the utmost importance… your life depends on it. The right knowledge is power and can improve the quality of your life. It most certainly has saved mine.

Listen to Orla and Kathleen on the DEARG Podcast discussing the vital role of advocacy in Ireland, addressing prevalent questions regarding cross-border care and addressing misinformation about endometriosis.  

Think like a leader and be the CEO of your own healthcare team

THE DEARG podcast Delivers Endometriosis and Adenomyosis Resources and Guidance, evidence-based insights, interviews with leading experts, and practical advice for navigating the challenges of living with the condition in Ireland.

Kathleen encourages women to ‘imagine being the CEO of your healthcare team, hire the best you can within the system that you are in. Often we are constrained by costs, resources and the healthcare system, but we can still use our power to advocate for ourselves and sort out the ‘team’ to work for us.’

As the leader of your healthcare team, keep good documentation, learn the art of summarising your notes and presenting medical information in a short but clear manner. Health appointments are short, this helps you get value for your time and money.

Kathleen recommends taking the free HSE ‘Living Well Programmes‘ designed for life with chronic illnesses and says they provide great structured tips to help.

Useful Endo Links and Resources

DEARG Podcast on YouTubeDEARG Podcast

INSTAGRAMKathleen King

INSTAGRAM – Orlagh Reid @thewellbeingpsychotherapist

INSTAGRAM: @centerforendocare | 

The Center for Endometriosis Care, USAwww.centerforendo.com 

FB: @DrEndometriosis | IG: @DrEndometriosis 

HSE Living Well Programme

Endometriosis Association of Irelandwww.endometriosis.ie

Endometriosis UKwww.endometriosis-uk.org

Nancy’s Nook

DEARG Podcast’s and EndoMarch 2024 Crowdfunding PageiDonate.com

Psychotherapy: One-to-one online Psychotherapy appointments with Orlagh Reid book online at www.orlaghreid.ie

Womens Health Group, Kilkenny Ireland – Dr Trevor Hayes – www.womenshealthgroup.ie

National Library of Medicine – Medical & Psychological Endometriosis Research – www.ncbi.nlm.nih.gov

Taylor and Francis Online – Medical & Psychological Endometriosis Research – www.tandfonline.com

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Orlagh Reid Psychotherapy

Orlagh Reid

Orlagh Reid is an IACP accredited Counsellor & Psychotherapist, Addiction Counsellor, Gottman Couples Therapist and Fertility Counsellor in private practice based in Co. Kildare, Ireland and worldwide online via DOXY. She specialises in addiction, recovery, well-being and clinical sexology. To find out more or to book an online consultation visit www.orlaghreid.ie

Orlagh Reid Psychotherapy MIACP Therapy Ireland

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