I firmly believe endometriosis awareness starts by educating the people within your circle of influence. While I know it’s important that people understand the destruction and the pain of this disease on a global level. Mostly because that’s the best way to ensure medical treatment is improved. There also needs to be an emphasis placed on open, raw conversations with family, and friends regarding endo. As I’m sure you’ve experienced, there’s an unspoken stigma associated with this disease. I’ve found personally that I’ve had to fight and combat this stigma on a regular, if not daily, basis. Maybe it’s the same for you too? The insensitive comments; ”You can’t be in THAT much pain.” And, incorrect misconceptions; “If you take this supplement, or do yoga you’ll be fine.” Or, dated myths; “Just get a hysterectomy and you’ll be cured.”
It’s these misconceptions, myths, and downright ignorance that makes an already devastating disease virtually impossible at times. Because in addition to fighting with medical professionals to be seen, heard, and believed. You’re also fighting with those closest to you for the exact same thing. And, while I’m not an expert of psychology or some relationship guru. I do think that being brave and showing up as the endo warrior that you are and having some real discussions with your inner circle can improve endometriosis awareness. So, what would this look like and how does one go about this?
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Share Honestly and Openly
This requires being raw, real and well vulnerable. Which can be hella scary but can potentially reach people and help them to see things from your perspective. But, it’s important to take note of your mental and emotional health before opening this particular can of worms. Sometimes people can say some pretty messed up stuff when they’re coming from a place of ignorance and misunderstanding. So, if you’re hyper-sensitive (hello, I’m talking to me right now) only have this kind of raw conversation when you’re in a good space (mentally and emotionally) to deal with what comes up. The process of learning and becoming aware of different ideas is a sticky tough place for many. And, it’s not always pretty. Yet, allowing the space for this kind of no holds barred discussion can really help increase awareness. A few key pointers to keep in mind with this kind of conversation is that you want to focus on defining and explaining what endometriosis is. Make sure to share pertinent info about your endometriosis journey, and how it impacts you. Yet, maintain zero expectations as to how the other person reacts and processes the conversation. Now, let’s dig deeper and discuss what this kind of conversation should look like.
Define and Explain Endometriosis
I’ve been so wrapped up in learning all I can about endometriosis and women’s health in general that I forget not everyone else knows what I know. The only reason I know is that, well I have endometriosis and I wanted to know all I could about this disease. So, when I’m discussing it with friends or family I have to truly remember they have no idea what this disease is. Furthermore, they have no idea how it impacts me. The same is going to be true for you most likely. Unless the person you know is personally affected by endo. Or, go through the struggle with you. Chances are, they’re going to be utterly clueless. Taking the time to really describe and define what it is can be eye-opening and informative.
Additionally, they don’t know how endometriosis affects you personally. We, endo warriors, know that endometriosis manifests itself in each person differently. My endo experience is going to be different from yours and vice versa. Yet, there are instances when people will know someone with endo and have a preconceived idea of what it is and does. And you’re gonna have to correct them. Letting them know that everyone’s endo experience is different and allowing open-ended questions without limits (this is the hard part) may help them understand endometriosis better.
Share Pertinent Info
Additionally, you may want to open up about what you’ve had to deal with in regards to your endometriosis. Sharing your current health, various treatments you’re trying, your fears, and future plans can help them see the impact endo has on your life. Also discussing flare-ups, chronic pain, painful periods, infertility, struggles with medical doctors. All of this can help make the issues that we face on a regular basis real to the outsider. Are there dietary or lifestyle modifications you had to make to manage your symptoms? How has endometriosis impacted your mental and emotional health? Share it with them. Again, opening the door to open-ended questions can better illustrate the impact this disease has on your health. Consequently, this can also help to improve endometriosis awareness.
Have Zero Expectations
Even with you being open and real you have to accept that some people just won’t get it. You’re not going to change everyone’s mind and it’s ok. Some people have a limited mindset and it’s truly hard for them to encounter new beliefs, ideas, or experiences. They may not agree with your treatment plan, or they may reject what you tell them and cling to old myths. You can’t make people see things your way. But, you can create solid boundaries about how much of your journey you share with them. Maybe this person just isn’t a safe person that you can add to your support team. Accept it and move on.
How Can They Help?
Most friends and family members truly want to help and want to see us healthy and happy. This is probably why it’s so hard to reconcile with the fact that endometriosis isn’t something that can be easily cured. Instead, it has to be managed, monitored and maintained for life. But, talking with them about simple ways they can help you manage this disease makes them feel useful.
One of the most important points to discuss with them is how they can support you during a flare-up. Are there specific things they can do that can help during your flare-up? If you have intense pain is there a hospital that you prefer? Do you feel comfortable making this person your emergency contact? Could they handle being your emergency contact? Share special medications and supplements that you’re taking. Make sure they’re aware of any trigger foods, food intolerances, allergies, and reactions. This goes a long way in helping prevent issues in the future. Knowledge and clear communication are powerful.
Debunk Myths & Misconceptions
Lastly, taking the time to clarify endo myths and misconceptions is important for endometriosis awareness. We live in a world where everyone has a point of view and means by which to express their said viewpoint. This has led to a lot of conflicting and dated information regarding endometriosis. Objectively listening to what they’ve heard or believed about endo and correcting them is so important. For instance, there are so many people that still believe a hysterectomy cures endometriosis. Or, that getting pregnant is a cure for endometriosis. Clear the air once and for all and properly educate them on the facts.
Getting Started
So, what do you think? It sounds easy enough right? Well, I can tell you from experience it’s not. But, I’m challenging myself this year to come out of my shell and to really use my voice to advocate for more awareness regarding women’s health issues. Especially endometriosis. I believe taking the time to make this small step and have real frank discussions with the people in my life will not only help me create a more authentic support system. But, it will also have a positive impact on endometriosis awareness. As scary as it is for me to be more vocal and vulnerable I do believe it’s worth it. Now tell me are you with me on this? What ways are you going to create awareness about endometriosis and advocate for your health this year?
About the Author
Hi, my name is Kathleen but you can call me Kat. I’m a health and wellness professional turned freelance writer and content creator. You can find me on YouTube and Instagram. If you take the opportunity to visit me on my other platforms don’t hesitate to leave a message, I would love to hear from you!
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