People and Tools That Have Helped Us With Our Advocacy Journeys
Last updated: October 2023
Behind advocates are people and resources that help them thrive. Family members or friends, apps or tools, each person’s supports are unique. The Social Health Network’s Facebook group recently asked 2 questions:
“If you could give one person an award for their help in your advocacy journey – whether that be a healthcare provider, your spouse, or a beloved pet – who would it be?”
“Are there any tools that have helped you on your chronic or terminal illness journey? Whether
that be an app, an assistive device, or something else?”
Here is what the SHN community had to say.
Apps and research
Respondents shared the research tools they found helpful for gaining insight into their disease. Reputable journal sites give them reliable information. Apps help to track symptoms and make connections.
“The Curable app. Good mix of meditation, journaling prompts, and educational pieces to learn about the effects of stress on chronic pain and other conditions. It helped me recognize the cycles of fear, stress, and pain that 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 symptoms of many chronic illnesses. Being responsible and staying safe while exercising is critical.
“I love urban poles.” (Walking poles to aid mobility and reduce the 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
Many respondents choosing to give out “support awards” named their parents. When a chronic illness began in childhood, parents began the advocacy journey. They fought for the diagnosis and care respondents needed. Parents continue their support as respondents assume advocacy roles.
“My parents. Without them, this would’ve been a much harder advocacy journey.” – Trishna Bharadia
“My mom (dad too), we’ve been a team since I got sick as a child. Mom has fought tooth and nail all along teaching me how to advocate for myself and others!” – Kristy Poindexter
Other respondents mentioned their partners as being their key support person. A partner’s unconditional love and acceptance make advocacy possible. They make life with 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.” – Elizabeth Leibowitz
Other support sources
Alongside partners and parents, other support sources enrich respondents’ lives. A caring doctor, good friends, pets, and other family members all offer valuable support for chronic illness.
“A hospital physician who literally saved my life when I was drowning in clots in my lungs and leg. I would have died had she not caught it and would have been sent home.” – Lisa Wells
“These days, my old girl CoCo Chanel (dog) keeps me going. Every walk and all of her carefree, loving energy brings me life! The lessons she teaches me about dealing with it all is amazing.” – Racquel Dozier
“I would award my daughter. She is so courageous and reminds me to stay focused on tangible outcomes.” –Elle Cole
“When I was stuck and suffering in a hospital in Berlin in Jan-Feb (for 18 days), my friend Kathy really went out of her way to help me. I’m forever grateful for her kindness, support, and humor – while I was in a painful and terrifying situation. Kathy helped me in so many ways.” – Angela Lundberg
The SocialHealthNetwork.com appreciates everyone who contributed to the conversation!
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