Behind Defenders are people and resources that help them thrive. Family members or friends, apps or tools, everyone’s media is unique. THE Health Social Network Facebook group recently asked 2 questions:
“If you could reward a person for their help in your advocacy trip – whether it’s a medical professional, your spouse or a beloved pet – who would it be? »
And
“Are there any tools that have helped you on your journey to a chronic or terminal illness? Whether
whether it’s an app, an assistive device, or something else? »
Here’s what the SHN community had to say.
Applications and research
Respondents shared research tools that they found helpful in better understanding their disease. Reputable review sites give them reliable information. Apps help track symptoms and make connections.
“The curable app. Good mix of meditation, journaling prompts and educational pieces to learn
on the effects of stress on chronic pain and other conditions. It helped me recognize the cycles of fear, stress and pain I was stuck in and gave me resources to use to break that cycle. – Lee Frost
“I don’t have a go-to app, but I do most of my medical research on the PubMed site.” – Alisa Brenes
Health tools for exercise
A few respondents shared the health tools they use. Staying active can help manage the symptoms of many chronic conditions. Being responsible and staying safe while exercising is essential.
“I love urban hubs.” (Walking poles to aid mobility and reduce impact on hips and knees.) – Rick Phillips
“I like that the Apple Watch has a pulse oximeter on it. It works well while exercising and being able to keep track of my oxygen levels. – Jackie English
Parents
Many respondents who chose to give “support awards” named their parents. When a chronic illness started in childhood, parents began the advocacy journey. They fought to get the diagnosis and care that respondents needed. Parents continue their support while sponsors take on advocacy roles.
“My parents. Without them, it would have been a much more difficult advocacy journey. – Trishna Bharadia
“My mum (dad too), we have been a team since I got sick as a kid. Mama fought tooth and
nail all along by teaching me to defend my interests and those of others! – Kristy Poindexter
The partners
Other respondents mentioned their partner as their primary support person. That of a partner
unconditional love and acceptance make advocacy possible. They make living with a chronic illness less lonely.
“My husband – I would not be able to do my advocacy work without his unconditional support!” – Maria De Leon
“My love, my Leon.” – Elisabeth Leibowitz
Other sources of support
In addition to partners and parents, other sources of support enrich the lives of respondents. A caring doctor, good friends, pets and other family members all provide valuable support for chronic illnesses.
“Hospital doctor who literally saved my life as I was drowning in clots in my lungs and leg. I would have died if she hadn’t caught it and I would have been sent home. – Lisa Wells
“These days my old girl CoCo Chanel (dog) keeps me going. Every walk and all her carefree,
love energy brings me life! The lessons she teaches me on how to deal with it all are amazing. –Raquel Dozier
“I would reward my daughter. She’s so brave and reminds me to stay focused on tangible things
results. –Elle Cole
“When I was stuck and in pain in a Berlin hospital in January-February (for 18 days), my friend Kathy really went out of her way to help me. I will be forever grateful to her for her kindness, support and humor – while I was in a painful and terrifying situation. Kathy helped me in so many ways. – Angela Lundberg
THANKS!
The SocialHealthNetwork.com appreciates everyone who contributed to the conversation!
