Advocating for yourself

Posted by loren12 @loren12, Nov 10, 2019

I think it is often hard to feel “heard” as you walk this journey. To feel understood may feel impossible. For me, that changed when I walked in and met with Dr. Kahn. I felt heard, respected and was a part of a real discussion instead of just being talked to. My past medical experiences have made me become a huge advocate fo myself which I feel is necessary in this process.

Being young and not fully understanding what all comes with being a girl to the extent that I do now, I was often told I had cramps, you’re fine, take Advil, it will pass. (This was never by family or close friends who truly believed something was wrong.) I would miss days upon days of school, lay curled up in bed crying and at times when the pain was too bad I would go into the ER only to be told I had cramps (again) and to go home. My patience hit its limit one day when I was living in Chicago and went to the hospital. I was accused by the ER doctor of just wanting drugs and turned away. At that moment I knew that I needed to start really standing up for myself. I collected every form from every doctor that I had seen related to this topic and started a binder. I met with my doctor in Edina, MN and she really worked with me to figure out a plan of what to do to improve quality of life. By this time, endometriosis had started to affect my digestive system as well and I rarely felt myself. The day I walked in to meet with Dr. Kahn he challenged me to use my voice, my experience and to speak up. He told me that this would continue to happen to girls around the world until people started to draw attention to the issue. He is right!

I cannot expect others to understand but I can help to educate them and hopefully the next girls who suffer will not have to walk the same road many others of us have. I believe that you know your body better than anyone and if something doesn’t seem right or a discussion with a doctor rubs you the wrong way you need to listen to your gut and push forward.

I agree that advocating for yourself is huge – if you don't speak up, no one will take the time to listen. As I read your post, my heart breaks for you. I am so sorry for all you had to endure and continue to endure. I feel like there should be a badge of honor given to you after all that you had to go through – or at least some sort of free coupon for unlimited chocolate for life. Speaking up for yourself is huge, whether it is in an endometriosis context or in IVF or in a little bit of both. With my journey, I struggled to differentiate between actual symptoms or if was "all in my head" but lets face it, if it is in your head, it will continue to be in your head until you speak up and let it out. Whether it is in contacting the MD about some random symptom or in trying to find the answer to an awkward or difficult question. The more I spoke up, the more I was heard.

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Hi @loren12,

I’m so glad you started this discussion – your post shows how important it is to persist in advocating for yourself – it is so true that we have to take part in our own care.
It’s one thing to know you need to be empowered, though, and another to actually feel empowered. I truly appreciate your sharing your health journey with us on Connect, and wish you all success.

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@abcdefghi

I agree that advocating for yourself is huge – if you don't speak up, no one will take the time to listen. As I read your post, my heart breaks for you. I am so sorry for all you had to endure and continue to endure. I feel like there should be a badge of honor given to you after all that you had to go through – or at least some sort of free coupon for unlimited chocolate for life. Speaking up for yourself is huge, whether it is in an endometriosis context or in IVF or in a little bit of both. With my journey, I struggled to differentiate between actual symptoms or if was "all in my head" but lets face it, if it is in your head, it will continue to be in your head until you speak up and let it out. Whether it is in contacting the MD about some random symptom or in trying to find the answer to an awkward or difficult question. The more I spoke up, the more I was heard.

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Chocolate for life sounds pretty good! 🙂 Thank you for everything you said! That really means a lot! I think sometimes it is hard to want to share simply because you are not sharing to have people feel bad for you but to help them understand. I think a part of me always worries it comes off as complaining and that is never the intent. I figure if my story can help anyone at all, then why not share it? I think after awhile I had to let go of worrying how things would sound if I spoke up and just do it. I would always wonder if I didn’t and it wasn’t worth the pain or worry! So, way to speak up for yourself!!!!

Liked by paddingtonk

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@kanaazpereira

Hi @loren12,

I’m so glad you started this discussion – your post shows how important it is to persist in advocating for yourself – it is so true that we have to take part in our own care.
It’s one thing to know you need to be empowered, though, and another to actually feel empowered. I truly appreciate your sharing your health journey with us on Connect, and wish you all success.

Jump to this post

Thank you! I hope thru this group we are all able to help empower each other!

Liked by paddingtonk

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Wow. So many strong women in this group. @loren12 my heart breaks for you. It is so frustrating when doctors don’t listen to you when you know something is wrong. Going against the norm for women and learning to speak up for yourself is so difficult.

Liked by loren12

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