This is the first article in a weekly series I’ve been invited to do for Cuddlist. I’ll be sharing information every Tuesday about chronic illnesses, disabilities, and addressing ableism to better serve clients and have a greater understanding of these topics.
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Contents also copied below.
Hello Cuddlists community, my name is Nellie Wilson from Northampton, MA. Each Tuesday I will be providing information on topics related to chronic illness and disability so that we can better address ableism (definition: discrimination or prejudice – intended or not – against individuals with disabilities) in our work and the world at large. Today I want to share some of my background and why I became a Cuddlist.
I live with a chronic illness that has created varying degrees of disability for the past 12 years of my life. It is an “invisible” illness (you can’t tell from looking at me that I’m sick) that was undiagnosed for many years (unfortunately an all to common experience for many people, particularly women). Trying to navigate persistent yet changing pain and a host of other odd symptoms lead to me studying massage therapy, a number of somatic modalities, and pursuing a master’s degree in Integrative Health, not only as part of my own healing but because I wanted to be able to help others.
My experiences of chronic illness and pain also lead me connect with others living with chronic illnesses and disabilities to learn from their experiences and to find a sense of community. I found that I wasn’t alone in the difficulty of navigating the health care system in America and I wasn’t alone in feeling isolated because of lack of physical energy, lack of accessibility at social gathering, lack of understanding from peers and colleagues and family. Connecting with chronic illness and disability communities opened up my eyes to the extent of the challenges and problems we face and the need for change in our society.
After finishing my master’s degree, my health took a turn for the worse and after living in the San Francisco Bay Area for nine years, I returned home to New England. I continued to face challenges with my health after settling in the Northampton, Massachusetts area, but it wasn’t until 2016 when I finally hit a crisis point with my illness that left me too sick to work that I truly realized the vulnerability, isolation, and social stigma that comes with disability.
I had been part of a support group for women with chronic illness for about a year when this crisis happened, so I had some social support. I was also very fortunate to have family and close friends who could provide practical and emotional support that kept me from homelessness and being totally consumed by the depression that is such a common co-factor in chronic illness.
As I started to regain some stability in my health and life circumstances, a friend told me about Cuddlist and that it might be work that I could do and would enjoy. I had been involved with Cuddle Parties when I was still living in the San Francisco Bay Area and had deeply enjoyed helping co-host those events. I knew that touch was important for well-being. I knew that I enjoyed hands-on work with people, but it made me see that I was lacking in having touch in my own life at that time. So I started seeking out sharing touch with more people as part of my healing journey.
Informal cuddling and talking about touch with friends started to happen more and more, as well as receiving massages in preparation for seeing if doing touch work with people was something I really wanted to pursue. When I finally talked with Madelon (we had taken the Foundations of Facilitation training together back in 2010), it felt like a clear yes – a home coming in a way – and I knew that I wanted to be able to offer this work to others experiencing the isolation, pain, and social stigma that I had with disability and chronic illness.
So here I am today, a certified Cuddlist, someone who has been involved in the disabled and chronic illness communities for many years now, and someone who wants to help others feel seen, heard, and cared for. I not only want to be serving my own clients, I want to help other Cuddlists better serve clients with disabilities and chronic illness. It is an honor and a privilege to get to share with all of you and I look forward to engaging with you in how we can collectively address ableism. See you next Tuesday!
To learn more about the women with chronic illness support group that I now help organize and facilitate meetings: http://northamptonwci.com