Advocate to Advocate Live

I was chosen again to attend HealtheVoices conference. What makes this particular conference unique is the safe meeting place for a wide range of patient leaders/advocates. Most times, a lot of the connections that take place are done via computer chat or phone. However, there is a special bond when connecting in person.

Hey, fellow survivor

Some patients like the bond in support groups, whereas others may go with other options. In any regard, meeting live in such a supported space is special. It’s stimulating to hear about shared experiences. The experiences shared can be remarkable once you get the full story of that other person’s journey.

Many stories from other advocates and their mission outside of blood cancer are amazing. Sometimes, it may feel like you’re the only one who has experienced trials and tribulations…and then you hear someone else’s story.

Sharing experiences

Shared experiences in person bring light to some very deep and concerning conversations:

• Healthcare Equity
• Misdiagnosis
• Cancer recurrence
• Remission
• Family
• Chronic pain

Care partners need love too

One thing is for sure and that is the love is not only shared towards the patients, but definitely with their care partners. It was awesome to converse with care partners, young and old who were there to support their loved ones. The opportunity for care partners to be included in the conversation and learn about other conditions and experiences made room for a full learning experience all around.

I have to give a shout-out to the two remarkable young people who were readily available to help their moms. One was 15 years old helping his mother with pulmonary arterial hypertension, it was an awesome sight to see. The other young man was a college student who helped his mom care for his sister who is a star as she was born at 13 oz, seeing his love and care for his sibling was indeed special!

Purpose

The main benefit of these types of in-person conferences is that they allow advocates to learn the best practices for using their voices in advocacy. Many patients learn how relevant their stories can be for the public, but also for those who actually work on the medications for our treatment. It’s great to share our voices and opinions and provide useful feedback, so the relevance of these types of conferences is very multi-layered.

Support portal

When you least expect it, we learn of the other means of support that are available to us. I’ve attended attending various conferences in the past and the sentiment continues in how important it is to share a seat at the table in sharing experiences. The amount of positive energy and in-depth conversations allows us all to relook at our stance when advocating and how vital it truly is.

The time to fight is now, with integrity, grace, hope, and a smile….when you feel like it