I was diagnosed with Fibromyalgia fourteen years ago. I remember not knowing how to spell or even pronounce it, let alone knowing what it meant to have to live with it! Tears rolled down my face for two reasons – the relief that I finally discovered the cause of my excruciating pain and the realization that I was going to be in the same pain for the rest of my life.
Fast forward fourteen years, I’ve had my share of struggles, disappointments, and frustrations. It’s difficult having an invisible illness – being in a place where nobody can ever tell how it impacts you on a daily basis, yet it affects every single decision you make in your life. I’ve come to realize that I consider it to be a blessing, and a curse at the same time.
Matt is a 33 year old Navy Vet. In the Navy, he was part of a team of first responders to the Fukushima-Daichi Power plant melt down after the Tohoku earthquake and tsunami in Japan 2011. After this exposure due to the nuclear melt down, he began to experience a myriad of health problems that have largely been a mystery until the past few years when he was diagnosed with lyme disease, mold toxicity, and Chronic Inflammatory Response Syndrome (CIRS).
Before he was diagnosed, Matt always said that he would be the loudest person on the internet, so that if anyone else was in his shoes, they would be able to find the answers that he spent years and countless doctors visits trying to find.
Matt started his Instagram account @chronicallymindfulmatt to educate others about chronic illness, and to help foster a community with others who share his struggles. He also talks about mental health issues and sobriety, as he has been sober for 4 years now. Before and during his worst pain symptoms, Matt started leaning heavily on mindfulness, breath work, and meditation, which he credits heavily with helping him get through some of the darkest days. Along with other topics, he talks about mindfulness and the power of taking care of your mental health.
Matt and his partner Emily moved to Colorado from Washington state in 2019 when they found out he had mold toxicity. They live with their dog Polar, and two cats, Sammie and Salem, along with a few rogue plant babies that they try really hard to keep alive.
Heather Von St James is a long-term survivor of malignant pleural mesothelioma. Upon her diagnosis over 15 years ago, Heather vowed to make people aware of this rare but deadly cancer and provide hope to new patients who found themselves in the same or similar situation. Becoming an advocate and anti-asbestos activist has been the driving force in her life since her diagnosis in 2005. Heather lives in the suburbs of Minneapolis/St Paul, MN with her husband, 15-year-old child, and numerous pets. A self-described iced tea addict, her days are spent working with new patients and volunteering with The Mesothelioma Applied Research Foundation where she is co-chair of The Community Advisory Board.
Jasmin Pierre is a mental health advocate, and the creator of “The Safe Place” a culturally competent mental health app for the black community on Android and ios. This app was created because of racial biases regarding societal issues, a lack of understanding about mental health in the black community, and in the healthcare field when it comes to understanding what racial trauma is, and how it can seriously impact mental health.
Jasmin is also the author of A Fight Worth Finishing, which details her experiences with depression and suicide, and “Generational awakening: The Strange Anxiety In Dauphine Royal” a culturally competent comic book, that focuses on the impacts racial trauma can have on the black community, after a racially traumatic situation takes place in the media. ( The comic is presented by the Safe Place App)
My name is Renée, I’m 32 and I’m from the Netherlands.
On the 12’th of March 2015 I got hit by a car as a pedestrian. The car was driving 60, launched me in the air and my body dropped back on the road at least 20 meters further. My entire life changed within just a fraction of seconds and it’s not what I imagined for my partner and myself. It’ll never be the same anymore. It’s not only my trauma but also my partner his trauma, whom is now my care giver. I had a near death experience that day and am very lucky to be able to tell my story.
In hospital they diagnosed me with a large horizontal skull fracture on the back of my head, which basically split my skull in half. Next to this I had several smaller skull fractures, right eye socket, rockbone, ankle, 4 pelvic, pubic and lower back fractures. A dislocated jaw, two types of cerebral hemorrhages. The entire right side of my face had gotten 100% paralyzed and more.
This trauma left me to learn how to live an “unfixed life” with a long list of chronic and mental illnesses. I’ll name a few; Traumatic Brain Injury, Seizures, Facial Paralysis & Synkinesis, Trigeminal Neuralgia, Chronic Migraines, Cluster Headaches, Fibromyalgia, Nerve Damage of multiple Nervous Systems, Tinnitus, lost ability to taste and smell, (C)PTSD, Depression, Anxiety, Psychodermatology, Body Dysmorphia and more (if interested you can read about a my illnesses on my Instagram)
Even though this is a life changing event which affects literally every aspect of my life, I wouldn’t change a thing. I’ve always been a highly sensitive person and an empath but this experience showed me how strong I really am. It changed me for the better and enhanced all my good qualities even though this is an ongoing grieving process for the person I could’ve been and how the life of my partner and myself could’ve been.
I’m now very passionate advocating, raising awareness and educating about chronic and mental illnesses. I feel it’s my duty to do so and it gives me the feeling of having purpose in life. I love to connect with likeminded people and support each other in any way I can in hopes to make others feel less alone, heard and seen. I have lots of personal contact with people within the chronic ill community and made friends with people all over the world, which I’m very grateful for!
It’s such an honor that I may call myself a Lyfebulb Ambassador and be a part of the Lyfebulb family! Lyfebulb does an amazing job connecting patients, care givers, charities, innovators, professionals, medical field and more together to make changes for the better. Thank you from the bottom of my heart. Much appreciated.
I’m wishing everyone all the best and am sending you all lots of love, light, positivity, strength and spoons. Feel free to DM me when you have any questions, would love a listening ear or anything else.
Mary Pettigrew is a freelance writer/blogger from Dallas, Texas. Her writing is multigenre in nature, with a focus on poetry, prose, essay, narrative interview. She is an ambassador & patient advocate for multiple sclerosis (MS), chronic illness, IBS/D, mental illness & disability rights. In 2014, Mary founded MSpals, an online support organization which has a global outreach on Twitter, Facebook & other platforms. In conjunction with MSpals, Mary created a group geared specifically for those with chronic illness & disabilities to post/share art, music, writing, etc. The group is called “Creative Expression” & can be found on Facebook.
Mary is active with the NMSS (National MS Society), HealtheVoices, WEGO Health and other patient leader/ambassador platforms.
Anna Giannakouros is a mother of three, retired from a career in the Software Industry. She was diagnosed with Multiple Sclerosis (MS) in 2009 and the disease has currently progressed to the Secondary Progressive stage. Her current mission is to live life in the present and enjoy life to the fullest. She’s an inspiring disability and chronic illness advocate who enjoys blogging and a following on Instagram. She’s an ambulatory power-chair user driven by a health and fitness lifestyle and enjoys cooking and following a Paleo and Keto eating regime.
In 2003, after suffering with symptoms since the early 1990’s, I was diagnosed with Multiple Sclerosis. As a high school teacher, I educated my school community and raised awareness so much that my MS Walk team consisted of upwards of 400 walkers. In 2011 I learned that I had broken at least 1 vertebra (line due to a fall thanks to MS) and underwent spinal fusion and decompression surgery, and continued to educate my community. Sadly, I became unable to perform
My job anymore and became disability retired in 2014. As I struggled to regain my strength and walk again, I found my way to meditation as a coping mechanism for the extreme sadness I felt, and the depression that was all encompassing. As I began to regain some strength I also incorporated light yoga to keep my body moving and my brain mindful. At the end of 2016 (12/30 to be exact), I was diagnosed with breast cancer. Just like everything else in my life I put a smile on my face and did what I had to, and today I am more than 4 years cancer free. During it all I leaned on yoga and meditation because they are the best non-medicinal tools I know. I even became a yoga teacher so that I could share the benefits of the practice with others because I know first-hand how well it works. Just when I thought I had been given all that I could handle, I was then diagnosed with diabetes in 2018. While I certainly have had my share of obstacles, never once have I asked “why me?”. What I always say is “why not me?”, because I am no better or worse than anyone else and I clearly am swimming in a very shallow gene pool. One thing that has been constant for me is helping others, whether it has been advocating at doctor appointments, helping navigate the difficult waters to SSDI, teaching free yoga classes, or simply talking on the phone with those who need help. From where I stand, despite it all, life is incredibly sweet and I am grateful for every single day.
Allison Rosen, is a Houston, Texas native, and colorectal cancer survivor. She dedicates her life to use her voice and platform to educate, advocate, and continuously learn how best to represent the collective adolescent and young adult community and the colorectal cancer community. Allison is a Project Director at the University of Texas Health Science Center at Houston, focusing on colorectal prevention. She has a combined 15 years of experience in the oncology space, focusing on designing, implementing, and evaluating public health programs and initiatives, to address cancer awareness and disparities among the medically underserved. She serves as a patient, research and policy advocate working with Fight Colorectal Cancer, National Coalition for Cancer Survivorship, American Cancer Society-Cancer Action Network, Colorectal Cancer Alliance, Colon Cancer Coalition, SWOG Cancer Research Network, and volunteers and serves on numerous committees at MD Anderson Cancer Center. Through her own experience at beating Stage 2 colorectal cancer, she works to bridge the gap between the healthcare system and the communities that it serves. Allison loves to travel, nature, music, dancing, and will never say no to an adventure.
Ella Balasa is a patient advocate and a person living with cystic fibrosis. Having a biology background, she is an advocate for the development of novel therapies for the treatment of antibiotic-resistant infections. She has spoken publicly about this issue as well as relaying the value of patient voice in research – most recently at the FDA and healthcare conferences. She believes in the importance of engaging patients to be active participants in healthcare by empowering and educating them to collaborate with stakeholders to improve disease outcomes. She has become a professional patient voice in research contributing to clinical trial development, research prioritization, developing patient engagement initiatives. Ella is also involved in the CF community through being a director of the US Adult CF Association and through her passion for writing. She writes about her research and healthcare experiences and introspectively about the hardships yet triumph that comes with living with a chronic illness. She has been published on numerous platforms including MedPage Today, HuffPost, and in Pulmonary Therapy Journal. Through opportunities working with healthcare organizations and sharing her journey through writing, she aims to affect the healthcare landscape to promote self-advocacy to patients and valuable insights to organizations