Multiple diagnoses and a passion for community

My Story

My name is Ambre. I’m a mother, a daughter, a sister. I’ve faced trials and tribulations. Triumphs and victories. While doing this, I have shared my story. I’m sharing it again, with all of you.

I began having problems with my heart rate being too high as a teen, over time it eased, went away. I was excited. In 2009 I had my son. Little did I know how much my world was about to change. I started becoming extremely tired in May 2011 having problems with my heart rate being even higher & collapsing, especially during physical activity. Within months i’d had so much testing done. Finally, I saw an Electrophysiologist and was told I had a rare form of SVT called, Sinus Nodal Reentrant Tachycardia. We immediately started aggressive treatment, which unfortunately failed. As a result, I had several cardiac ablations performed. I also had a pacemaker implanted at the age of 25, in February 2012. In total from 2012, I've had 4 cardiac ablations.

I thought things were figured out. I was so very wrong. This was just the beginning. I was diagnosed with Dysautonomia in March 2013. Due to comorbidities of Ehlers Danlos Syndrome, as well as Gastroparesis, I suffer severe digestive issues, including intestinal dysmotility, and colonic inertia. Due to the severity of my gastrointestinal conditions, I rely on TPN (Total Parenteral nutrition, which means iv nutrition) for the majority of my nutrition. I was also diagnosed with a rare form of chronic kidney disease in 2017. It’s been overwhelming at times. Over the last few years, my conditions have changed so much about not only my life, but also my family’s. How does one adjust to not just one new diagnosis, but multiple ones, multiple conditions which have no cure and minimal treatment? It’s not been an easy journey. At times there’s been anger, betrayal, sadness, depression, anxiety. The amount of emotions I've experienced over this journey has been tremendous. Though, through this journey I've found purpose. I’ve found my calling. My journey led me to my passion, advocacy. Helping others.

I have participated in several lobbying events with the Everylife Foundation, as well as the DDNC to advocate for legislation for the rare disease and chronic illness communities. I was also a panelist at the 2021 Global Genes Patient Advocacy Summit. In September 2022, I will participate in the Patient Centricity & Collaboration Congress, where I am a keynote speaker on the topic of patient advocacy, and patient involvement in healthcare.

I have advocated for better education regarding both home enteral and parenteral nutrition (HPEN). I am active on social media, sharing my story in hopes it helps others. I am an advocate for more discussion about self esteem, and body image issues that people struggle with within the chronic illness community. I am a fierce advocate of breaking the mold, and empowering others to see their worth and beauty. I have participated in photoshoots to help promote/encourage body positivity for those with medical devices, & chronic illness.

I also strive to break the taboo blocks of mental health discussion in chronic illness. I created Living With Dys in 2013 when I was struggling to cope with my new health issues, my new way of life. It started as a blog, just to get my thoughts out, process what I was going through. Over the years it’s grown into something amazing. It’s been nominated for several awards, which is such an honor. My dedication, hope and motivation led me to create Chronically Strong, a program within Living With Dys. Where I will strive to give hope, encourage and empower others to see themselves beyond their diagnosis, and to have hope for a future.

In full transparency and honesty, one thing I have struggled with is social media. I have struggled with how some groups are run. How some are so inherently negative. How so many don’t like any light, any beacon of hope. It’s so alarming, it’s disheartening. As not only a patient, but also an advocate, my heart hurts for those group members. I think in some ways social media has helped the chronic illness community, but I also feel it has harmed it. The comparison to others, the self diagnosis, the medical advice in groups is harmful, and honestly dangerous. We should be a community united. A community together, building each other up, creating a support system for us. Instead I see a fractured community, where belittling and the tearing down of others happens at an alarming frequency. I am so saddened this is happening, and worried about how harmful it is to the chronic illness community. It can and does affect mental health. Being basically bullied, verbally attacked and spoken harshly to in what should be a safe space can further the feeling of isolation, of being alone. We need to work together to bridge this gap, to have a space for everyone to share their triumphs as well as their trials.

I have spoken about this, not only in my writing, but on social media. Not only of this, but of how chronic illness has impacted my self esteem, my confidence. I think this is a topic that truly needs to be brought to the forefront. It’s a conversation that should be happening, and a network be built to create a space in which we empower and uplift each other. At times I've had to take breaks from social media because it’s been so overwhelming, I've been in trouble for sharing an accomplishment, no matter how small, or excited I was. How can sharing something I accomplished in spite of my health, be seen as a negative thing? How can we not share in the good? How can we not share things we’re so happy to have achieved, or accomplished? We can’t only share the bad, while wanting hope, or wishing for better. There must be a balance. Balance is necessary in this.

Though through this all, I’ve had the love and support of my friends and family. They have given me strength when I've needed it. My conditions don’t make me less of a person, I believe it has made me a stronger person. They haven’t made me less worthy or deserving of happiness and love. It is my hope that through educating others on our daily struggles, and exactly what this disease does, we can help each other. I hope by sharing my story, my journey I can help others. I can give some hope to those struggling as I have and as I do. I hope to create a community of amazing individuals that are facing chronic illness, or are a caregiver/spouse of someone with. You’re not alone, we are right here with you.