Do you remember the moment you realized you were an advocate?
Did you have an "aha" moment when you realized (like it or not) that you were becoming an advocate or influencer?
Do you recall your first official advocacy/influencer moment or event? What was it?
When I was diagnosed with COPD, I was feeling so alone. I went to a few sites, it didn’t seem like I fit in. No one responded to my posts or comments. I finally posted online, asking if people had COPD and and if they needed a friend. My site was open and named COPD Friends for Friends. Eventually I had 25 sites and 3-4 moderators. The sites were busy.
My life took some major changes. I was so overwhelmed. I dropped some sites that weren’t very active, eventually I cut back some more and I was online more often, one on one. It was busy. People liked the one on one better. I was also one on one with family members of the one with COPD and other health issues.
These issues were COPD, asthma, allergies, a family COPD site, a fun site, diet, exercise, cooking, prayer, a Cop Wives site, after we had a shootings in our area and more.
With so much going on in my personal life, I gave some sites to my moderators. They do help me and I do them. It’s rewarding to talk one on one with family, or the COPDer and they seem to have the most need. The individual one with different lung diseases and other as well.
Sorry, I get carried away. Those who struggle the most, who seldom post are the ones that I feel like I best chatting with. No matter what their topic.
, wow, that's amazing! You can divest and still be involved, because I get the feeling of connection and responsibility. I hate feeling like there may be someone out here who is not reaching out. Thank you for sharing! - Warmly, Donna (Team Member)
Yeah after seeing reactions of close friends after I disclosured my AIDS diagnosis. I heard of their experiences with their family members. I knew then I could help destroy some of the stigma surrounding it.
it's still a great struggle as heterosexual men with HIV are rarely even mentioned at conferences or studies , that is sad and perpetuates stigma around HIV. That's so disheartening in this day and age. I am glad that you are in the field to help dispel misinformation. -
On another note, I was excited to see news the other regarding the 6th patient to achieve long-term remission after discontinuing his HIV meds 5 years ago. I hope we can make the stem-cell therapy available to all, sooner than later. - Warmly, Donna (Team Member)
Yed
Thank you so much for being part of a important solution 💗
