People and tools that have helped us on our advocacy journeys – News Block

Behind advocates are the people and resources that help them thrive. Family or friends, applications or tools, each person’s supports are unique. The Health Social Network Facebook group recently asked 2 questions:

“If you could give one person an award for their help in your advocacy journey, whether it be a healthcare provider, your spouse or a beloved pet, who would it be?”

and

“Is there any tool that has helped you on your way to a chronic or terminal illness? Yeah
Will it be an app, an assistive device, or something else?

This is what the SHN community had to say.

applications and research

Respondents shared the research tools they found useful in obtaining information about their disease. Reputable magazine sites provide them with reliable information. The 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. She helped me recognize the cycles of fear, stress, and pain that I was stuck in and gave me resources to break that cycle.” –Lee Frost

“I don’t have a reference app, but I do most of my medical research on the PubMed site.” –Alisa Brenes

Health tools for exercise.

Some respondents shared the health tools they use. Staying active can help control the symptoms of many chronic diseases. Being responsible and staying safe during exercise is critical.

“I love urban poles”. (Walking poles to aid mobility and reduce impact on hips and knees.) –Rick Phillips

“I like that the Apple Watch has a pulse oximeter. It works well while I’m exercising and I can keep track of my oxygen levels.” –Jackie English

Parents

Many of the respondents who chose to give “support awards” named their parents. When a chronic illness started in childhood, parents began the advocacy journey. They fought for the diagnosis and care that the respondents needed. Parents continue their support as respondents take on advocacy roles.

“My parents. Without them, this would have been a much more difficult advocacy journey.” – Trishna Bharadia

“My mom (dad too), we’ve been a team ever since I got sick as a kid. Mama has fought tooth and nail
He nails it all the time teaching me how to advocate for myself and others!” –Kristy Pointdexter

partners

Other respondents mentioned their partners as their key support person. from a partner
unconditional love and acceptance make defense possible. They make life with chronic illness less lonely.

“My husband, I couldn’t do my advocacy work without your unconditional support!” – Maria de Leon

“My love, my Lion.” –Elizabeth Leibowitz

Other sources of support

In addition to partners and parents, other sources of support enrich the lives of the respondents. A caring doctor, good friends, pets, and other family members offer valuable support for chronic illness.

“A hospital doctor who literally saved my life when I was choking with clots in my lungs and leg. He would have died if she hadn’t caught him and sent me home.” –Lisa Wells

“These days, my old CoCo Chanel (dog) keeps me going. Every walk and all her carelessness,
Loving energy gives me life! The lessons it teaches me about how to deal with all of this are amazing.” –Racquel Dozier

“I would reward my daughter. She is very brave and she reminds me to focus on tangible things.
results.” –Elle Cole

“When I was trapped and suffering in a hospital in Berlin in January-February (for 18 days), my friend Kathy really went out of her way to help me. I will always be grateful for her kindness, support and humor, while she was in a painful and scary situation. Kathy helped me in so many ways.” – Angela Lundberg

Thank you!

SocialHealthNetwork.com thanks everyone who contributed to the conversation!