What are you most proud of?
Within your personal life, health journey, or advocacy work, what are you most proud of, or what accomplishment fills you with the most pride?
After working with a research project on the ethical issues adults with rare diseases face in Québec ('20-23), including publishing 3 academic papers (in itself a big source of pride!), we developed a virtual workshop for healthcare professionals, and we will finish our preparatory phase next month. We got financial backing from a grant and the Québec Health Ministry might also help us financially, as well as with finding groups to present to. When I started my advocacy in 2013 with a blog, this was my ultimate goal! I'm proud but also grateful to have this opportunity! It's like my advocacy and my new career (as a patient partner) came together!
, that is an incredible accomplishment! Kudos to you! And I love the subject - ethical issues - there are so many that I believe no one thinks about. I wish you great success and look forward to hearing more about your activities in the future. - Warmly, Donna (Team Member)
I have cared for many people but most of all many of my own family members. What I am most proud of is giving hope to those that struggle with being able to see they can make it through anything with the right attitude. Reassuring them to fight the battle with positivity and being a voice for those who can't, or just don't know how to speak for themselves. Everyone is somebody's loved one and they deserve to have someone stand in their court and fight the battle with them!! It one day could be your family, when it is you would hope for them to be treated with love and respect!! Never forget that we all matter. I love helping anyone I can.
, empathy is so important to understanding others in our sphere. Helping others feel less alone, and supported is a gift to the giver as well as the receiver<3 - Warmly, Donna (Team member)
When I was diagnosed with Sjogren's Disease (still stubbornly called "syndrome" in many places), I began to write about the illness, and what it's like to live with it. One of my blog posts has been shared so many times (I don't know how many at this point) and people comment that it's extremely helpful in explaining the disease to people in their lives who "think it's in [their] heads". Whenever someone thanks me I am so pleased and grateful to contribute. https://healthpsychforliving.com/shes-not-a-princess-she-has-sjogrens-syndrome/
, thank you for sharing the link! It is amazing to be an instrument that brings understanding and validation. - Warmly, Donna (Team Member)
While working as a career counselor under a private contractor for the TANF program in South Florida, I witnessed rampant fraud that was wrongfully penalizing participants in order to get the numbers for the contract requirements. The perpetuation of learned helplessness was sickening in such a time limited for life program. Our supervisor also had some of us writing papers for him to get his bachelor's degree, which he was supposed to have already. I became a whistleblower. It came at a great personal cost that I could never have imagined. But, in the end the Inspector General for the state made sure clients had time restored, and that contractor can never do business in the state again. I lost my job, my house & my health. But, I would do it again. Many of my coworkers wouldn't participate in the fraud either & lost their jobs.
, thank you for your integrity and bravery. I'm just sorry that doing the right thing/the moral thing was so costly. - Warmly, Donna (Team Member) Well, my health went from bad to worse. I was diagnosed with ME/CFS while still employed with this contractor. It's hard to advocate for yourself when you can't sit up or get out of bed. I even had a "right to sue" letter from the state. But my attorney missed the filing date & she was suspended from the Florida Bar for resisting arrest. I just keep trying to adjust. I have learned that all my work for non-profits has resulted in me being a bit of a non-profit. I still have a hard time calling myself disabled. Minimizing stress has become an art form. I am in a bit of a remission right now & clinging to it. I'm dedicating a lot of time to Covid-19 prevention, warning people that they could live through it, only to be disabled by Long-Covid, along with its numerous complications--not the easiest sell in rural Oregon. And of course, I caution those I see in "hamster wheel" working conditions or under "chronic acute stress" to make changes, since either of those with various genetic expressions can result in ME/CFS. Children and adolescents are no exceptions to this either. I appreciate your care & concern.
