Be Your Own Advocate

It’s not that no one cares about you; it’s that no one cares about you the way you care about you – or at least you should. Doctors, specialists, treatment partners, family members, employers, friends…they care, but they’re not you. They can’t make decisions for you, they don’t experience what you experience, and YOU are responsible for your choices.

The medical system can be intimidating. It sometimes seems that women’s health is the least-supported area, and it may take a while for you to get the help you need. Since even the best doctors aren’t always familiar with Endo, you may experience a labyrinth of appointments, exams, pills, and assumptions. It can be frustrating, isolating, and stressful.

Advocating for myself didn’t come easily. My Endo journey began when I was just 15; I didn’t feel comfortable butting heads with people more than twice my age. They were bigger, older, and knew more about medicine than I did; I didn’t know how to stick up for myself. I didn’t know how to refuse treatments I didn’t want. I didn’t know I had the right to stop exams that made me uncomfortable. Looking back, there are so many times I should have stuck up for myself.

When you begin traversing the various clinics, hospitals, and appointment rooms, you will inevitably run into practitioners (traditional and non-traditional) who look down on you, talk over you, or dismiss you. You may feel belittled, ignored, or unheard. Don’t make the mistakes I did: stick up for yourself. Demand the opportunity to speak and ask questions. Require practitioners to hear you. Insist on information before making any decisions. Make sure the decisions made are YOURS.

Some practitioners may refuse to see you again if you don’t like their treatment plan. Don’t worry about it. It’s better than being railroaded into treatment that makes you uncomfortable.

In the end, you’re the one who has to live with the outcomes of each treatment. Whether it’s pills, body adjustments, dietary changes, herbal remedies, or something else, it’s YOUR body, so it’s YOUR choice. Don’t back down.

Come to your appointments prepared. Do your homework so you can ask intelligent questions. This will make it harder for them to dismiss you, and it will identify you as someone actively engaged in your treatment; you are not a passive patient. If something makes you uncomfortable, speak up – yes, even in the middle of an exam. If you say stop, they’re required to do so. To do otherwise is assault.

Every time an Endo patient demands to be heard, it’s one step further for us all. Don’t be intimidated by white coats and medical terminology. Ask questions. If you don’t understand, ask again. If you’re uncomfortable, tell them so. If you compromise in your treatment, you will compromise your health.

Be your own advocate. Refuse to be silenced.


With peace & joy,
Cher