The Patient Advocacy Circle of Life
by Jackie Zimmerman, Owner Jackiezimmerman.co
Health Blogging, Multiple Sclerosis, Ulcerative Colitis
I saw a Twitter thread recently
from a friend and fellow advocate
who was wondering what his future
in patient advocacy looked
like. Ive seen these types of
threads a lot over the years and I
understandIve been there. Maybe
its the new set of Lion King
socks I recently purchased, but Ive
been sharing this idea of the patient
advocate circle of life a lot lately
and now its time to share it with
all of my advocate friends. Whether
youre new to advocacy, or
youve been around the block a
few times, take a peek. Let me
know what you think. I believe
there is a lifecycle in advocacy.
After almost 15 years in the game
this is what Ive noticed:
New Advocates – These are the
freshly inspired bunch.
Theyre newly diagnosed
or have a loved one
who is. Theyre fired
up about helping people and are
excited to be sharing their stories.
They do a lot of one-on-one education
and support for other patients.
Strong and Steady Advocates –
These are the advocates who have
been on the scene for a few years.
Theyre still working on growing a
following, and theyre getting
some cool opportunities in advocacy.
Their hard work is starting to
pay off.
The OG Advocates – The OG advocates
have been advocating for
many years. Many started before
social media and their names are
permanent fixtures in their communities.
Theyre invited to be speakers
at events, to sit at the table with
pharma, and are often working
hard behind the scenes
on things that
NDAs
prevent
them
from sharing.
I remember when I started my first
blog many moons ago, I was so
eager to talk to other patients. To
help them. To educate anyone who
would listen. A few years in, one
of my best friends in advocacy
stepped back. She closed her website
down, all of her blogs and resources
were gone, and I was angry
with her. I kept thinking about all
the amazing things she had created
for other patients that were no
longer available. I couldnt imagine
walking away from advocacy
and just being done. Wasnt she
letting people down? Was she turning
her back on us? How could she
do that?
Fast forward a few more years, and
I was starting to feel the weight of
the work that goes into advocacy.
And I do mean work. Never let anyone
tell you that your blogs or
videos, even your Tweets, are not
work. All of us here know the time
it takes to write a blog or film a
video, create the graphics, and
schedule it out on social media.
Whether youre working a job right
now or not, your advocacy IS a job
and we all take it so seriously. This