Self Advocacy

“I want to help put a dent in the stigma around anal cancer,” says actress and advocate Marcia Cross in the Spring 2024 issue of ACG Magazine. In this compelling feature, Cross shares her personal journey with HPV-related anal cancer and her mission to raise awareness within the gastroenterology community. Her story underscores the importance of open conversations and proactive screening to improve patient outcomes.

What is self-advocacy?

Self-advocacy is speaking up for yourself to ensure you get the best care, asking questions about your healthcare options, and making sure your needs and concerns are met by your healthcare provider.

How To Be Your Own Best Advocate

Sometimes, you have to step up and ask for what you need regardless of what others think or say. That’s what self-advocacy is all about.

I have no problem doing that, even when (and especially when!) the topic is something that is usually whispered about: HPV and anal cancer. You see, I don’t care what people think. I had anal cancer and it was because of HPV. I want and need to talk openly about anal cancer because I don’t want others to go through what I did. I believe everyone has the right to have the best access to information about the risks, how to prevent the infection and associated cancers, and the treatments available. I believe this approach is critical if you want to be your own best advocate.

I realize it can be challenging to advocate for your own healthcare. After all, the healthcare maze can be confusing and frustrating to navigate. It can be difficult to get your doctor’s attention. Here are my tips on how to advocate for yourself:

Believe in yourself: You deserve quality care and clear answers. Doctors aren’t always right, so trust your instincts and seek a second or third opinion if needed.

Identify what you want: Before seeking better healthcare, identify your needs. Are you asking about HPV transmission, the vaccine, or protecting your children from HPV?

Know your rights: Everyone deserves equal healthcare. If you’re unsure of your rights, ask a trusted doctor, nurse, or advisor for help.

Educate yourself: Research HPV and its related cancers using reputable sources like medical organizations, nonprofits, and experts. Review multiple trusted websites for accurate information.

Create a support team: Talk to friends, family, healthcare professionals, and support groups for information and support on HPV and related cancers.

Plan your strategy: Use your information and support wisely. Prepare questions for your doctor, bring a supporter to appointments, discuss concerns with your team, and identify helpful people or organizations to assist with your plan.

Speak clearly and with authority: Be brief and clear when speaking your mind. Practice with a supporter, and use notes or bullet points to stay organized.
Be confident and persistent: My motto: Don’t give up! Stay focused, follow through, and reach out to supporters if you lose confidence.

Becoming Shame Resilient

At HPV Cancers Alliance, we understand that not everyone is met with compassion and understanding when it comes to their health

Create a safe space
Share with people who are safe
Figure out what you want to feel, like going through life without shame
Vulnerability is a privilege
Not all at met with compassion and understanding
If I speak it – it makes it exists, not acknowledging disease to free them of the burden
Let’s acknowledge your need for care rather than the disease

Sexual trauma & clinical care:
The lay audience understands the importance
Treat the anxiety / emotional response to

Dr. Wendy Kline- The history of the pelvic exam: increased discomfort, fear and anxiety behind the exam > because of female reproductive organs, borders on sexual. Boundaries between medical procedures and sexual acts.

Grotesque origins of gynecology – experimenting on the disempowered.