My story is a complicated one but one I believe was meant to be shared with you.
MY STORY – The Short Version
To say life has taken quite a few unexpected twists and turns over the last 44 years is an understatement.
I navigated through my teenage years with some pain and symptoms that were challenging at times but overall remained latent. In my mid twenties after having a traumatic birth with our third child, I began experiencing symptoms that quickly progressed to struggling to get out of bed in 2008. I was first diagnosed with connective tissue disease, later diagnosed with Lupus in 2012. I spent years juggling my health, family life with four young children, and medical supplies that weren’t for me but my youngest son.
I continued to struggle with pelvic pain, heavy cycles, which caused heart issues and severe anemia in 2019. Eventually it all led to one of the worst medical experiences I have endured. After a decade of ignored symptoms I needed a radical hysterectomy due endometriosis and adenomyosis. Also needing not one but two blood transfusions due to internal bleeding in 2021.
Most recently in 2024 after a lifetime of symptoms – muscle and joint pain, significant tension headaches, clicking joints, IBS, and being “very flexible, ” I found it all was related to having Ehlers-Danlos syndrome (EDS).
It has been a long and treacherous road but with each passing year I learned more about myself and how to better navigate the healthcare system.
Managing my own diagnoses has been difficult, but coping with the challenges I’ve faced with my children’s medical complexities has by far been the biggest obstacle of my life. I have spent the last decade fighting to be heard and my experience valued in order to get the correct diagnoses and treatment for two of my children who have rare and chronic diseases.
I have experienced years of gaslighting and trauma – being dismissed, ignored, and questioned by not only medical and academic professionals, but by family and friends. It has been a soul searching, eye opening experience, one I wish no parent ever has to walk through. I have made it my life mission to help educate, support, and empower women and families to use their voice to better advocate for themselves.
What made you decide to become an patient advocate?
I’m a big believer that things happen for a reason, even when we can’t see it at first. Finding the silver lining through the most difficult times is the lesson that leads you forward. I’ve turned my life experience into a purpose, becoming a Board Certified Patient Advocate in 2022.
“It’s so much more than being a voice for others. It’s inspiring others to have the courage to stand up and discover their own voice. To provide them with the skills and support they need to keep going and rediscover their power to transform their own lives is an incredible. It makes everything I’ve gone through worthwhile, it’s something so much bigger than me. Giving back, advocating for, and empowering women and families to advocate for themselves has given me a purpose. I have come so far and if I can help someone feel less alone, understood, seen, and heard, I’ve done what I was put on this earth to do. I can’t imagine doing anything else.”
What does Self Empowerment mean to you?
Navigating years of medical trauma does a number on you mentally and physically. It can be very isolating, often times leaving you feeling alone and completely misunderstood. Constantly hearing the thoughts and opinions of others and second guessing your own. I found myself lost, screaming yet silent, in a world in which I was invisible. Putting my worth in everyone else’s hands. I reached a breaking point in my life, in which, I recognized the importance of focusing on myself. Reflecting on my life and owning every piece of my story. Facing all that I’ve been through and all that I’ve learned along the way. Recognizing parts of me have changed and that’s okay. I’ve spent years rediscovering who I am, what I believe, what I want, what I will or rather won’t tolerate, and who I want to surround myself with. Learning to change what I can and know when to let go. There has been a lot of pain and darkness. Times I questioned life, my worth, and my purpose here on earth.
Looking within to find myself again has given me the clarity I needed to lead life on my own terms with courage and confidence. The process was key to creating boundaries where I never had any. I feel the most grounded, aligned, and confident in who I am and where I’m going.
Self empowerment is a skilled practice that has led me here and truly changed my life.
I truly believe it’s a crucial for those with chronic diseases and anyone who have experienced medical trauma and gaslighting. It is a stepping stone to becoming a better advocate for themselves and overcoming all they have endured.