Women form group to help give others emotional support
SARATOGA SPRINGS, N.Y. » Nell Pritchard grew up in the Albany area, while Martel Catalano lived in New Jersey.
But their fathers, Chuck and Tony, played football against each other at Albany-area high schools.
Their parents went out to dinner a couple years ago, after Catalano’s parents moved to Saratoga Springs. Their mothers realized Nell and Martel were around the same age, and each had a differ-
ent rare, incurable disease.
Shortly after, Nell and Martel met. That was 2016. Now, the two have launched a nonprofit called Beyond My Battle, which aims to help those with degenerative diseases handle the emotional stress associated with living with the disease or disability.
Nell and Martel went to support groups for their conditions. They heard story after story about the experiences of someone going through the specific disease, but they left wanting something different.
“We both were remembering being younger, and being just terrified of these spaces. They weren’t helpful at all to us,” said Catalano. “They are helpful. We don’t want to say that they aren’t helpful to some people, because definitely some people want that. But that’s why we’re trying to change the conversation because we think it’s more productive whether you know it or not, to talk about what’s going on for you on a more emotional level, getting to the root causes of your stress.”
The conversation first began to change with a Facebook group.
Almost 1000 people have joined the Beyond My Battle support group online. It’s a private platform that requires approval, but parents and loved ones and those with degenerative diseases are welcomed to join.
Catalano has Retinitis pigmentosa. She joined a Facebook support group for the disease with 10,000 others. But she said it’s not peer facilitated.
“Studies show that peer facilitation is a more effective way of keeping a collective group on the same plan, especially when we’re talking about reducing stress,” said Catalano.
As managers of the group, Nell and Martel propose questions, topics and upload videos ranging from finding a job or workplace environment to understanding anxiety and communicating with family.
“The fact that everyone has different conditions, and we really don’t have people comparing notes. We don’t have people comparing themselves to one another, and that was the beauty of it,” said Catalano. “That was why we started it in the first place, because we were just so tired of seeing people feeding off of each other’s misery.”
The Facebook group began the mission. Now Nell and Martel are growing the nonprofit, striving to provide emotional support and educational resources for people with chronic illnesses and disabilities.
Beginning April 17, Beyond My Battle has 35 days, through a crowdfunding campaign with IndieGoGo, to reach their goal of $13,000. The campaign, as well as the opportunity to donate, can be made at www.beyondmybattle.org. Donations are tax-deductible and go to creating resources like toolkits and eBooks that will be assessable and available to the public.
“We believe there is actually a lot still a lot within our control,” said Catalano. “It’s how we respond to our situation, so we’re focusing on a more positive, mindful approach that looks to reducing stress, building resilience and cultivating mind-body wellbeing.”
As essential to the mission as providing the support and resources to those with medical conditions, it’s equally important to provide literature and information to their families, friends and caretakers, they sayd.
“It can be difficult to understand the emotions of – and therefore support – a loved one who’s living with a chronic disease or disability,” said Pritchard.
Beyond My Battle resources will be accessible to anyone, anywhere, through their online platform.
“We really feel that people who are living with something that’s out of their hands are living with a kind of stress that’s pretty unique and we want to give them the tools to manage that, so they can actually just be the healthiest version of themselves,” said Catalano.