I was 9 years old the first time I had to watch the school clock and remember to change my pad every 30 minutes.
It’s not what I wanted to be thinking about at that age. Before I started having periods, my biggest concern in life was deciding which Barbie to play with.
I loved cutting and reshaping the dolls’ hair, creating different outfits for them, and setting up amazing play dates in my Barbie Dreamhouse. The school day was composed of hours of anticipation leading up to the joy of my Barbie world.
But from the age of 9 through adolescence, my life consisted of making sure I took care of the “woman” within me while still navigating my childhood.
At 27 years old, I was finally diagnosed with endometriosis. I had no direction, just the painful memory of that 9-year-old girl who thought that something was wrong with her.
Feeling isolated, I wondered if anyone really understood what I was going through.
I was tired of feeling depressed from the pain, frustrated with the isolation, and disconnected from other women with endometriosis.
So I researched to see how many people had the same condition as me.
That meant there had to be other people like me that I could reach. I realized there must be a way to advocate around a condition that affects so many women and girls globally — including that 9-year-old girl who blamed herself for something she had no control over.
That’s when I came up with the idea to start sharing my story on social media @imaprilchristina. My page gave me an outlet to express myself in ways I couldn’t by keeping it all inside.
As time passed and I learned more about endometriosis, I realized how much advocacy was needed in the endo community I’d joined. We needed to band together to create a stronger movement.
It might be hard to figure out what type of advocacy is best for you. Here are some ways you can be an agent of change.
Who knows your symptoms and body better than you?
Journaling is a way to jot down your thoughts in real time. You can write about things such as the flow of your period, breakthrough bleeding, endo flares, and perhaps most importantly, your emotions.
When you’re sitting in front of your doctor, it can be difficult to remember everything you wanted to say. Your journal can help guide you through important appointments.
Your journal can also help relieve some of the frustration and anxiety related to seeing the doctor. You can write down key points your doctor tells you, so for the next visit, you and your physician will be on the same page.
Reading your past journal entries can help you identify patterns in your symptoms.
I recommend carrying a journal in your bag. As women on the go, we never know what we may encounter with endometriosis. It’s important to be prepared to keep track of new symptoms, emotions, flare-up triggers, or anything else that comes up.
Or a third, if you have to!
This is not a slight to your current physician. If your gut tells you to seek another consultation, there’s nothing wrong with doing so.
The key to the best possible care is making sure that your needs are met at every doctor’s visit. If you don’t feel your needs are met, researching and advocating to learn more about your body is okay.
Second opinions can help you and your doctor take a more in-depth look at what’s really taking place so that you can pinpoint what your next steps (if any) should be.
Support goes a long way in your journey.
Be it a friend, family member, partner, or fellow endo sister, having someone with you at your appointments can be extremely helpful.
Advocacy doesn’t happen on its own. It’s even more powerful with a team in your corner.
Even an ear to listen can help you feel less alone. Your loved one can remind you of what you wanted to talk about or communicate a message that you may miss in the moment.
I know, at times, explaining your endo story to other people may be hard.
I’ve been there. It can be quite difficult to find the right words for everything. As you open up, you may have to relive some very personal moments in your life.
But the once fearful 9-year-old girl turned her pain into purpose, and you can too! There is freedom in explaining your journey.
I went undiagnosed for so many years because I didn’t exemplify the “known symptoms” of endometriosis. But if I hadn’t shared my story, I don’t know where I would be on my journey today.
Know that your story is unique, necessary, and valid. Sharing it can help our community be stronger and give healthcare professionals a better view on how to care for us.
Everything we go through is a conduit to empower someone else. Advocacy has taught me that.
Advocacy can take various forms — but it begins with you.
You are strong in more ways than one, so never sell yourself short. Your voice has the power to make a difference.
This is why it’s important to speak out and bring awareness for the fight against endometriosis. You can help me by preventing another 9-year-old girl from going through this alone.
April Christina is a beauty and wellness blogger who resides in New York City. After being diagnosed with endometriosis in 2010, she decided to turn her pain into passion and found her purpose by educating people to adopt a healthier lifestyle. Her goal as a blogger and endometriosis advocate is to show people that they’re not alone in their struggles. She continues to inspire people on her website, and Instagram.