1. Why is it important to advocate for yourself if you live with endometriosis?
Advocating for yourself if you’re living with endometriosis isn’t really optional — your life depends on it. According to EndoWhat, an advocacy organization of people living with endometriosis and healthcare providers, the disease affects an estimated 176 million women worldwide, yet it can take 10 years to get an official diagnosis.
Why is that? Because the disease is grossly under-researched and, in my opinion, many doctors haven’t updated their knowledge about it. The National Institutes of Health (NIH) invests more than in medical research on a variety of conditions — but in 2018, endometriosis only received $7 million.
It personally took me four years to get a diagnosis, and I’m considered one of the lucky ones. A simple Google search on endometriosis will likely bring up a host of articles with outdated or inaccurate information.
Many institutions don’t even get the actual definition of the disease correct. To be clear, endometriosis occurs when tissue similar to the lining of the uterus appears in areas of the body outside the uterus. It isn’t exactly the same tissue, which is the mistake I’ve noticed so many institutions make. So, how can we trust that any of the information these institutions give us is correct?
The short answer is: we shouldn’t. We need to be educated. In my view, our entire lives depend on it.
2. What are some specific times you might need to self-advocate? Can you provide examples?
Simply getting a diagnosis takes self-advocacy. Most women are dismissed because period pain is considered normal. So, they’re left to believe that they’re overreacting or that it’s all in their head.
Debilitating pain is never normal. If your doctor — or any healthcare provider — tries to convince you that it’s normal, you need to ask yourself if they’re the best person to provide your care.
3. What are some helpful key skills or strategies for self-advocacy and how can I develop them?
First, learn to trust yourself. Second, know that you know your own body better than anyone else does.
Another key skill is learning to use your voice to express your concerns and to ask questions when things don’t seem to add up or are unclear. If you get flustered or feel intimidated by doctors, make a list of the questions you want to ask in advance. This helps you avoid getting sidetracked or forgetting anything.
Take notes during your appointments if you don’t think you’ll remember all of the information. Bring someone with you to your appointment so you have another set of ears in the room.
4. What role does condition research play in self-advocacy? What are some of your favorite resources for researching endometriosis?
Researching is important, but the source that your research comes from is even more important. There’s a lot of misinformation circulating about endometriosis. It may seem overwhelming to figure out what’s accurate and what isn’t. Even as a nurse with extensive research experience, I found it incredibly difficult to know what sources I could trust.
My favorite and most trusted sources for endometriosis are:
5. When it comes to living with endometriosis and self-advocacy, when have you faced the biggest challenges?
One of my biggest challenges came with trying to get a diagnosis. I have what’s considered a rare type of endometriosis, where it’s found on my diaphragm, which is the muscle that helps you breathe. I had a really hard time convincing my doctors that the cyclical shortness of breath and chest pain I would experience had anything to do with my period. I kept being told “it’s possible, but extremely rare.”
6. Does having a strong support system help with self-advocacy? How can I take steps to grow my support system?
Having a strong support system is so important in advocating for yourself. If the people who know you the best minimize your pain, having the confidence to share your experiences with your doctors becomes really difficult.
It’s helpful to make sure that the people in your life truly understand what you’re going through. That starts with being 100 percent transparent and honest with them. It also means sharing resources with them that can help them understand the disease.
EndoWhat has an incredible documentary to help with this. I sent a copy to all of my friends and family because trying to adequately explain the devastation this disease causes can be very difficult to put into words.
7. Have you ever had to self-advocate in situations that involved your family, friends, or other loved ones, and the decisions you wanted to make about managing your condition?
It may seem surprising, but no. When I had to travel from California to Atlanta for surgery to treat endometriosis, my family and friends trusted my decision that this was the best option for me.
On the other hand, I did often feel like I had to justify how much pain I was in. I’d often hear, “I knew so and so who had endometriosis and they’re fine.” Endometriosis isn’t a one-size-fits-all disease.
8. If I try to self-advocate but I feel like I’m not getting anywhere, what should I do? What’re my next steps?
When it comes to your doctors, if you feel like you aren’t being heard or offered helpful treatments or solutions, get a second opinion.
If your current treatment plan isn’t working, share this with your doctor as soon as you realize this. If they aren’t willing to listen to your concerns, that’s a red flag that you should consider finding a new doctor.
It’s important that you always feel like a partner in your own care, but you can only be an equal partner if you do your homework and are well-informed. There may be an unspoken level of trust between you and your doctor, but don’t let the trust make you a passive participant in your own care. This is your life. No one is going to fight for it as hard as you will.
Join communities and networks of other women with endometriosis. Since there’s a very limited number of true endometriosis specialists, sharing experiences and resources is the cornerstone of finding good care.
Jenneh Bockari, 32, currently lives in Los Angeles. She’s been a nurse for 10 years working in various specialties. She is currently in her final semester of graduate school, pursuing her Master’s in Nursing Education. Finding the “endometriosis world” difficult to navigate, Jenneh took to Instagram to share her experience and find resources. Her personal journey can be found @lifeabove_endo. Seeing the lack of information available, Jenneh’s passion for advocacy and education led her to found The Endometriosis Coalition with Natalie Archer. The mission of The Endo Co is to raise awareness, promote reliable education, and increase research funding for endometriosis.