[Image Description: Headshot of Rebecca, smiling, looking into the camera. She’s wearing vibrant and dynamic aqua, blue and chartreuse colors.]
I’m a life-long ponderer, nerd, reader, artist and problem-solver. I love all the things that go along with that – consuming information, writing to sort my mind out, talking with and learning from others, making things, trying things, organizing things.
I live with severe chronic illnesses that significantly limit how often and for how long I can do those things. I have severe Myalgic Encephalomyelitis (sometimes know as Chronic Fatigue Syndrome or ME or ME/CFS), which is a complex, debilitating, neuroimmune disease that is still poorly understood. I also have Postural Orthostatic Tachycardia Syndrome (POTS), a disorder of the autonomic nervous system, Mast Cell Activation Syndrome, and Fibromyalgia, all of which are common in folks with ME. For more information or resources, head on over to Chronically Rebecca: Chronic Illness Resources.
I spend my time at home in Ithaca, NY with Marigold Dog and Sadie Cat. I rely on professional aides and a dedicated network of friends to help make our lives work, from grocery shopping to cooking to making the bed to dog walking. I am passionate about supporting other folks with chronic illness improve their quality of life. I network with and provide direct support to others online, spread awareness among non-disabled folks, and advocate for policy changes and research funding.
I can usually be found in bed, on my phone, watching TV, reading on my tablet, or taking a nap.
Before leaving the workforce, I spent my career in the world of non-profit management. My depth of experience is in high-level fundraising, with a focus on prospect development, research and management. I know a lot about identifying prospects, engaging with them, and asking folks for money. I’m passionate about it, and happy to talk with folks and offer limited advice.
A collection of resources and virtual gathering spaces for chronically ill and disabled folks in the greater Ithaca, NY area.
- Facebook page: This group is for disabled and chronically ill folks in the Ithaca area to connect, support each other, share resources. Allies are welcome, and welcome to participate, with the understanding that disabled voices, concerns, perspectives are centered.
- Facebook group
- Instagram page
Ithaca NY Area ME/CFS Support
- Facebook group: A place for ME/CFS patients in the Ithaca, NY area to connect, share resources, and find support.
Chronic Dream Collective: Thriving with disabling chronic illness
- Facebook group : We found ourselves longing for a juicy, nurturing space in chronic illness community, and thought, maybe others long for this too. We’re sick, and live with tons of constraints, be they mobility, severe fatigue, allergies, or chemical sensitivities. Some are housebound or bedbound. We’re striving toward acceptance of our realities and limitations. But we’re also committed to joy, engagement and transformation. To pursuing what living is when life isn’t what we expected. We want to hold space for all of it, trade ideas, share successes, acknowledge disappointments, and lift each other up. We’ll talk about our lives, hobbies, food, art, plants, pets, cozy bedding, percolating ideas, writing, activism, and other things we haven’t dreamt yet. We value connection, authenticity, acceptance, personal growth, and creating the world we want to live in. We’re invested in racial justice, disability justice, affirming queer space, solidarity and listening to each other’s stories.
Do you want to make connections with other chronically ill and disabled folks who are finding their way towards joy? Who embrace each other with kindness, positive intent, enthusiasm and humor? We’d love to welcome you.
- Instagram page
25% of ME: Support Group for Severe CFS/ME
I am not the founder of this project, but have been a dedicated member of the admin team since 2019.
- Facebook group: 25% of ME: Support Group for Severe CFS/ME Is a private, international, support group for ME/CFS patients who are housebound and/or bedbound folk with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (and their caregivers). ME/CFS patients in our group are generally too ill to work. Some get out of the house once in a while, others are barely able to move. This is a fluctuating, spectrum illness. While not all members are well enough to participate regularly, we do encourage folks to engage with each other with a spirit of generosity, vulnerability, kindness, and exchange. We don’t tell others what choices to make, but do share our own experiences. The community thrives on the dynamic of reciprocity, of both asking for and offering support, as folks are able. We support a non-judgmental environment where we can ask for advice and support from others who share the same challenges. We tackle life hacks, hygiene challenges, symptoms, pacing, treatment approaches, working with doctors, dealing with loved ones, disability, and more. We share best practices, our hopes, successes, and fears. While members span the globe, the majority are located in the US, the UK, Australia, Canada, and New Zealand. Location has a significant impact on available treatments and resources. We are not affiliated with the UK group 25% ME.