How Has Lyme disease affected your life? What inspires you?
Olivia, a Lyme and CIPD warrior who is turning sickness into strength.
I’m a 25-year-old survivor and thriver – and I wear many hats!
During the week I’m the Coordinator of STEPS Resource Center, an all access center for young adults in the greater Boston area who are struggling. I provide one on one therapeutic support and many other resources including food, laundry, showers, internet access, clothing, interview attire, job coaching and support groups. I also give motivational speeches all over New England on topics such as surviving Lyme Disease, CIDP and significant childhood trauma.
I spend my weekends chasing my dream to be an actress and model – a dream I couldn’t keep up with when my physical illness was much worse. I’ve recently been working on building my portfolio to sign with an agency. My mission is to use my acting and modeling to spread awareness of Lyme Disease as well as both physical and invisible disabilities while supporting body positivity, realness and self-acceptance. Though I’m much better than I was, things like random allergies and SIBO have come up since I’ve started working again and that has been challenging to work around in this business. I hope to start a YouTube Channel or blog soon about how to navigate the industry as someone who lives with chronic illness.
It’s been about 4 years since I was first diagnosed with Lyme Disease. That being said, my symptoms date back to about 12 years ago. I was misdiagnosed with many conditions including Hashimotos, POTS (Postural orthostatic tachycardia syndrome) degenerative disc disease, recurring SIBO, autoimmune anemia, fibromyalgia, etc…
The scariest part of my journey was when I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy which developed after having untreated Lyme for so long. At this point I had a lot of difficulty feeling my hands and feet and would have huge weird spasms. Sometimes I couldn’t walk so I had a cane and walker to use as needed. My brain fog and confusion was so bad that I couldn’t read very well either. I felt like I was dying. I started IVIg immunotherapy, which saved my life. I could think again, I could work and I can still walk, which not everyone with CIDP can do – as CIDP is a wheelchair bound disorder.
I think most of my strength comes from my experiences of both Lyme disease and childhood trauma. I would say my greatest strength is my resilience, which I wouldn’t have developed without all of the suffering I’ve endured. My trauma and illness have also given me the opportunity to inspire others to face their demons and illnesses instead of being victimized by them. An important part of being a model is being a role model.
One of the greatest gifts my experiences with illness and trauma has given me is gratitude. Especially after a few near death experiences, I feel like every day is a gift. I truly don’t think I’ve had a day I would consider completely bad since almost dying. The roses always smell sweet to me.
I love modeling for Mighty Well since Mighty Well’s mission coincides with mine – turning sickness into strength. The modeling industry is not always disability friendly in the way Mighty Well is. It’s so great to be a part of the industry I love and work in, while also supporting the disability community.
Many people believe that modeling is just about beauty and that it is skin deep. For me, I consider modeling the chance to tell a story using just one frame or image. I want the Mighty Well community to know that their story is my story, a story of resilience, like it is written on my wrist.
Want to follow Olivia’s journey? Check out her Instagram here.