What Are Some of the Ways That You’ve Felt Supported by Friends & Family
Endometriosis is a difficult disorder to have to deal with – physically and emotionally. If you have a loved one that has been diagnosed with endo – they need you now more than ever. But even if you’re looking for ways to support them, sometimes it can be hard to know where to start.
For Endometriosis Awareness Month, we’ve decided to reach out to our network of endo sisters for their input. Who better to lend their expert advice on endo support than women and girls that are currently battling it? We’ll be breaking down their answers into a series of blog posts designed to help the loved ones and caretakers of those with endometriosis. Together, we can make a difference in the lives and outlook for those affected by this painful disorder. Today, we’re tackling the question: What do you wish your friends and family knew about endometriosis? Keep reading for tons of valuable insight from these brave endo warriors – and check back soon as we dive into more of their responses in future blog posts.
What Are Some of the Ways That You’ve Felt Supported by Friends & Family?
“When I spent two weeks in the hospital before we knew that I had Endometriosis, my friends and family never left my side. My husband, then boyfriend, was with me night and day between work hours to make sure I knew I was cared for. His family and mine visited daily, and friends sent their love and support throughout one of the most painful and frightening times in my life. After my diagnosis, friends truly tried to understand what I was going through, and made sure that no matter what I knew that I had a reason to live despite the suffering.”
– Kate Priest
“I am very lucky to have parents, who may not understand the nuances of the disease, but who have always stood by me. They have taken the brunt of some of the horribleness of the disease because pain makes me a little mouthy and they are who is closest to me but they have never given up on me and just walked away. I am also so very lucky to be part of a club of endometriosis advocates, who are always there for me, ride or die. These women have held space for me through the tears of an unplanned oopherctomy, they have traded recipes as I found my way through food allergies, they have left phones on any time day or night in case we needed each other and when I felt abandoned by the medical machine of endometriosis, which unfortunately happens often in my life with endometriosis, these women have fought for me like they were fighting a battle for themselves. Everyday I work in endometriosis, I remember that I am that person for so many, and I am grateful for those who get me through it all.” -Dr. Sallie Sarrel
“Definitely hearing family and friends say that they know that it is hard for me and that they will never understand what it is like to be me, but that they will always be there for me and support me and continue to advocate for me.” -Michela, age 15
“I have been very active in speaking about my endometriosis from pre-diagnosis through to my current role as chairperson of the Endometriosis Association of Ireland. I receive wonderful support from friends and family in dealing with my chronic pain and often the debilitating symptoms that come with endometriosis. As the oldest of 6 girls, my dad played a huge role in supporting me through my first period which started as they all would follow, with severe pain and flooding. My partner is an amazing endometriosis advocate and educator in his own right and is always on hand for mental, physical and emotional support. There are times when living with endometriosis that life seems very bleak, the pain sears and almost paralyses you. In my 29 years living with endometriosis, I have met the most amazing women online who have become lifelong friends, so while endometriosis has its negatives, it also has an amazing community support.” -Kathleen King
“Shown compassion when I needed to change plans with little or no notice. Made me a cup of tea to help during and after a pain flare. Held my hand while the pain was high.” -Dr Allegra Hart
“I have felt supported by friends and family who have made a space for me to share my pain, my challenges, and my fears surrounding managing the disease. I think it is hard to sit with someone in their hopelessness and their frustration without trying to actively figure out ways to resolve the obstacles at hand. But often patients need someone to simply listen, not someone to fix what is wrong. The act of being present with someone in their pain is enough and can help alleviate some of the burden.” -Casey Berna
“I think I’ve been incredibly lucky in my journey to have parents that never doubted there was something wrong with me. I’ve never once felt like they didn’t take my pain seriously, and while this may seem trivial to some, this can be one of the most crucial things to an endometriosis patient. If your support system doesn’t believe you or isn’t committed to finding a diagnosis, a woman may give up on herself before getting there. We cannot give up on ourselves or our daughters.” – Melissa Tison
If you have a loved one that is suffering from endometriosis, it can feel difficult to know where to start when it comes to supporting them. The good news is: you don’t have to be an expert on the subject to show up for your loved one in a meaningful way. Start small – even the simplest of actions can serve to make someone feel loved, and their burden a little lighter.
Tara and the BPP team
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