Hi, I appreciate everyone sharing their information and knowledge. There seems to be a great variety of classifications patient advocates fall under. I'm moving forward, thank you all!
Just a word of caution to all of those who use website content management systems, such as Wordpress: they have the ability to take down your site at any time, for any reason. And you'd lose everything that lives there. That lesson came from Trisha Torrey's own personal experience, as it happened to her.
An aside — if anyone wants the name of someone who has built incredible sites for multiple independent patient advocates, feel free to reach out to me. I know him personally and can vouch for his work.
That being said, kudos to all of you doing it on your own! Super impressive.
I want to know more from anyone who has a backup/emergency advocate in place for these situations.
As of right now, what I've put into place lives in my contract. It all falls under one clear header «Holidays, Planned Absences, and Unexpected Unavailability» under my «Hours of Operations and Communications» section. I let clients know that unexpected illness, along with a couple of other things beyond my reasonable control may temporarily affect availability. And that as soon as I'm reasonably able, I'll notify the client of anything that could cause an interruption to our agreed upon services, to my response time to them, and communicate to the best of my knowledge the anticipated duration of my unavailability. (That's not the wording word for word, but you get the gist). This is something I plan to verbally call clients' attention to around the time of signing the contract. I think if I'm honest about this possibility, especially as something many clients can relate to, it will usually garner trust.
Melina, can you explain a bit more how this works? I really like the idea, but it seems a bit daunting — do clients have to sign the backup advocate's service agreement? How do you handle permissions on what client information, medical records, and your personal notes from work with that client can be shared?
I'd love to connect. While I don't specialize in pancreatic cancer, I did work in a hands-on patient care clinical role for two year in gastroenterology and I have multiple personal lived experiences with complex post-surgical care.
Heres a link to my calendar if you'd like to chat: calendly.com/rebecca-wholestoryadvocacy/fellow-advocate-meeting
I'm touched that you shared your journey here so openly. And I'm thrilled to meet another lived experience advocate who brings such a multifaceted collection of experience: the clinical experience, the personal lived experience — of both your own arduous medical journey, and of standing beside your family as they faced their own journeys through severe health challenges and healing. And all of it informed by your own experience of advocacy as a child. There is such a beauty in the bringing together of all of these things. I can see it plainly in the way you talk about advocacy and how your understanding of advocacy evolved throughout all those many life chapters you lived through.
Your story speaks towards something I strongly believe is true — lived experience is not confined only to one's personal medical journey. It also includes the journey one takes living life alongside a loved one who is sick or injured, and it includes other formative life experiences, challenges of survival, like what you faced as a child. All of it, it all contributes to your story of survival. The story that shaped you into the advocate you would become.
I would bet a lot of us lived experience advocates specialize, either partially or entirely, in our own diseases. I specialize in chronic pain and complex illness, so between my personal life and my work, not to mention the education I pursue and my involvement in the wider world of systemic advocacy, it can feel like it's all pain all day, one way or another.
I know for me, the work takes, but it also gives back. The increased burden on my body is counterbalanced by how diving into the work can stave off the pain. But like everything, it's a balance, and it's certainly not one that I've mastered. I hope that balancing act is something we can talk more about here.
I think you brought up another really important point of discussion. For those of us who do specialize in our own diseases, who see all the different forms it can take and things that can go wrong, and for whom, as is the case for me, our diseases have no easy answers and no cures — how do we cope with looking into the possible futures that we're repeatedly confronted with? How do we keep hope alive, both within ourselves, and for our clients, while remaining respectful and honest about reality?
Likewise AnnMarie, I'm so grateful you helped make this dream become a reality.
Wow, I can't imagine what it must have been like to have a firsthand seat to the rapidly evolving landscape of EDS over the past 25 years, as an early-diagnosed EDS patient yourself and an active member of the advocacy community. It makes me wonder, to use your own words, how we adapt and adjust to such rapid changes, both as patients and as advocates.
Thank you, John. I feel so lucky to have formed such a close personal and professional relationship with you, which would never have happened had it not been for this wonderful advocacy community.
I have for a very long time been limited to working from the most comfortable space I can create. It's often the couch — the couch I picked specifically for this reason, with maximum comfort in mind. These days more and more, when I don't have the spoons to transfer to the couch, the bed is my second work home.
I love the idea of trading services with another advocate. During my last week-long hospitalization I reached out for help from a fellow advocate (you know who you are and I'm forever thankful). Even advocates need advocates. The pain took away my ability to really communicate, and when you're the one in that bed, I think your power is limited.
You love it though?
An aside — if anyone wants the name of someone who has built incredible sites for multiple independent patient advocates, feel free to reach out to me. I know him personally and can vouch for his work.
That being said, kudos to all of you doing it on your own! Super impressive.
I want to know more from anyone who has a backup/emergency advocate in place for these situations.
As of right now, what I've put into place lives in my contract. It all falls under one clear header «Holidays, Planned Absences, and Unexpected Unavailability» under my «Hours of Operations and Communications» section. I let clients know that unexpected illness, along with a couple of other things beyond my reasonable control may temporarily affect availability. And that as soon as I'm reasonably able, I'll notify the client of anything that could cause an interruption to our agreed upon services, to my response time to them, and communicate to the best of my knowledge the anticipated duration of my unavailability. (That's not the wording word for word, but you get the gist). This is something I plan to verbally call clients' attention to around the time of signing the contract. I think if I'm honest about this possibility, especially as something many clients can relate to, it will usually garner trust.
I'd love to connect. While I don't specialize in pancreatic cancer, I did work in a hands-on patient care clinical role for two year in gastroenterology and I have multiple personal lived experiences with complex post-surgical care.
Heres a link to my calendar if you'd like to chat: calendly.com/rebecca-wholestoryadvocacy/fellow-advocate-meeting
I'm touched that you shared your journey here so openly. And I'm thrilled to meet another lived experience advocate who brings such a multifaceted collection of experience: the clinical experience, the personal lived experience — of both your own arduous medical journey, and of standing beside your family as they faced their own journeys through severe health challenges and healing. And all of it informed by your own experience of advocacy as a child. There is such a beauty in the bringing together of all of these things. I can see it plainly in the way you talk about advocacy and how your understanding of advocacy evolved throughout all those many life chapters you lived through.
Your story speaks towards something I strongly believe is true — lived experience is not confined only to one's personal medical journey. It also includes the journey one takes living life alongside a loved one who is sick or injured, and it includes other formative life experiences, challenges of survival, like what you faced as a child. All of it, it all contributes to your story of survival. The story that shaped you into the advocate you would become.
I would bet a lot of us lived experience advocates specialize, either partially or entirely, in our own diseases. I specialize in chronic pain and complex illness, so between my personal life and my work, not to mention the education I pursue and my involvement in the wider world of systemic advocacy, it can feel like it's all pain all day, one way or another.
I know for me, the work takes, but it also gives back. The increased burden on my body is counterbalanced by how diving into the work can stave off the pain. But like everything, it's a balance, and it's certainly not one that I've mastered. I hope that balancing act is something we can talk more about here.
I think you brought up another really important point of discussion. For those of us who do specialize in our own diseases, who see all the different forms it can take and things that can go wrong, and for whom, as is the case for me, our diseases have no easy answers and no cures — how do we cope with looking into the possible futures that we're repeatedly confronted with? How do we keep hope alive, both within ourselves, and for our clients, while remaining respectful and honest about reality?
Wow, I can't imagine what it must have been like to have a firsthand seat to the rapidly evolving landscape of EDS over the past 25 years, as an early-diagnosed EDS patient yourself and an active member of the advocacy community. It makes me wonder, to use your own words, how we adapt and adjust to such rapid changes, both as patients and as advocates.
I love the idea of trading services with another advocate. During my last week-long hospitalization I reached out for help from a fellow advocate (you know who you are and I'm forever thankful). Even advocates need advocates. The pain took away my ability to really communicate, and when you're the one in that bed, I think your power is limited.