How to be Your Own Health Advocate

by Heather Guidone

Many facets of endometriosis continue to be hotly debated, and much is still unknown about the condition. As a result, access to quality care can prove difficult and the disease can be isolating, making it hard for affected individuals to advocate for themselves and truly feel they are being heard. Fortunately, there are a few steps we can take to navigate the journey.

When we know better, we do better. Endometriosis education is the key to making informed decisions about our care, and educating those around us can also ensure that we have allies in our journeys.

Those struggling with endometriosis can benefit from educating themselves as thoroughly as possible utilizing trusted, credible sources. Here are a few resources we recommend:

endometriosis.org
endopaedia.info
endometriosis.ie
topendodoc.com
endometriosisaustralia.org
endometriosisassn.org
www.bepreparedperiod.com
endocenter.org

nzendo.org.nz
endoinvisible.org
caseyberna.com
sarrelgroup.com/salliesblog
theendo.co
endowhat.com
endowarriorssupport.com

We also recommend educational groups like Nancy’s Nook for Endometriosis and Endometropolis on Facebook. Be sure to also check out the scientific literature, which is constantly updated, and review the latest with your physician. Some of the best mainstream books on the disease include:

100 Q&A About Endometriosis by David B. Redwine, MD
Stop Endometriosis & Pelvic Pain by Andrew Cook, MD
A Key to Healing Through Nutrition by Dian Shepperson Mills
FemTruth: Scandalous Survival Stories by Silvia Young
Living with Lung & Colon Endometriosis by Glynis D. Wallace

As you do your ‘homework,’ be sure to gather all the knowledge you can about every treatment option – surgical/traditional/alternative – including the benefits of each, risks, possible side effects and likely outcomes based on data and reported experiences. Understand – and follow – the treatment plans you choose. It’s important to also have realistic expectations about those treatments, including recovery times. Remember, you are a partner in your care and the leader of your treatment team, so don’t be afraid to ask questions, speak up about side effects, or try another option. Here are some other important things to keep in mind as you handle endometriosis.

1. Remember the importance of self-care: and practice it daily.

Remember *you* are the expert on *you.* No one knows your body or quality of life better than you do. Pain is a good teacher; if you are getting signals that an activity is too painful or you need a break, listen to the message. It’s okay to say ‘no’ to others, to take time for yourself, to avoid activities that exacerbate or induce a flare, and to navigate your own health journey in a manner that is best suited for you and your own lifestyle.

2. Support is critical.

Connecting with others who understand is an invaluable component in overcoming endometriosis. Often, those who have traveled the path before us will have valuable insights and lessons learned to share. Seek out legitimate organizations that can provide you with access to their endometriosis support networks and empowerment resources. Don’t be afraid to tell your story – get involved in the fabric of the endometriosis community; when we help others, we are also helping ourselves.

3. Be a partner in your care

Gone are the days of the ‘passive patient.’ Remember that you are ultimately in charge of your own treatment decisions. Of course, respectful communication goes both ways, but don’t be afraid to speak up; share your narrative and express your needs effectively to your health team. Be prepared: ask questions – bring a list – and take notes. Don’ be afraid to ask a trusted friend or loved one to accompany you.

4. Insist on comprehensive, compassionate and continuous care from your providers.

Learn the office policies of each and their protocols for emergencies. Seek a second – or third, or fourth – opinion, or even change practices if necessary. Endometriosis is a multidisciplinary disease, so you may very well also benefit from the expertise of other practitioners (PT, nutritionists, etc.) apart from your managing provider; don’t hesitate to seek out such collaborative care and explore all the options available. Know your rights regarding insurance, health laws, workplace protections and other bureaucratic aspects of healthcare, and keep copies of all your medical records.

5. Raise awareness.

By raising local awareness (or beyond), you are helping to elevate the disease to a priority public platform. Endometriosis continues to be dismissed by some physicians, caregivers, the media and public at large as simply ‘painful periods.’ This invalidation sustains the ongoing 10-12 year delay in diagnosis and leaves many suffering in silence. Help correct persistent myths and misinformation and insist on timely diagnosis, effective intervention, increased research and better support for yourself – and all individuals with endometriosis.

You are not your illness: endometriosis does not define us or in any way lessen our worth. Step back from our culture of ‘labels’ and know that it is entirely possible to manage the disease effectively – on your terms, in your own way, in a manner you choose best for your life. And finally, don’t give up: we have heard that ‘there is no hope and no help’ for this disease so many times that we might actually start to believe it. To the contrary – there is hope, there is help, and you are worth it. You are your own best advocate in your journey with endometriosis. Through knowledge, empowerment and collaboration with those who understand, it IS possible to live well in spite of the disease.

Heather Guidone is the Program Director at Center for Endometriosis Care & Member of the Executive Board at Endometriosis Research Center Hey Endo Sisters and supporters! When you shop Be Prepared Period, you can feel good knowing you’re supporting a business that supports Endometriosis research. Shop using the link below, and we’ll donate 5% of proceeds to the Endometriosis Research Center. This offer applies all year round – so you can give back while you order your monthly supplies.