patients with HIV or aggressive autoimmune arthritis or inflammatory bowel
disease or diabetes or cancer or mental illness or psoriasis have in common
other than a difficult time with a chronic disease?
out quite a lot if they are also patient advocates.
just returned from the 2nd
where 90 plus online patient advocates from around
the world and representing a wide range of patient communities met to learn
from each other and share best practices and common challenges.
conference was a chance to reconnect with other e-advocates, meet new friends, and get out of my
CLL (chronic lymphocytic leukemia) silo. I am deeply grateful to Janssen
and Everyday Health
for their sponsorship of the gathering.
follows is a few reflections formed from the conference and my life online for
the last 8 years.
advocates tend to be found in chronic diseases.
many acute illnesses may be treated sub-optimally and there can be controversy
in terms of what is the best therapy, most of us either simply recover from our
short-term illness or it is our terminal event. Either way, we are usually no
longer involved in advocacy because we have moved on, be it from not worrying very
much about a disease we can only see in the rearview mirror or from having
departed this mortal coil altogether.
case we don’t care, in the other it’s too late.
lighthearted example of the first circumstance, I can find no advocacy
organizations or bloggers dedicated to lightening the load of the sufferers of
an acute and painful sore throat. Sure, we can get plenty of advice online
about symptom control for our pharyngitis and we can read guidelines about when
to and not to use an antibiotic, but generally the issue is moot in about a
week and half. There is simply not enough sick time to generate any sustained long-term
bigger and much darker issue is that advocacy organizations are usually filled
with patients who suffer from the diseases themselves. Sadly, we patient
advocates can and do get sick and die. Hence much of the advocacy work in the diseases
that too often offer a short leash such as pancreatic or brain or esophageal
cancers is either not by the handful of the brave survivors who beat the odds
or by surrogates for the cancer fighters such as family and caregivers touched
by the disease. Just as history is written by the winners, advocacy is done by the survivors. As a result, the diseases with the worst prognoses often have the fewest online resources.
We are luckier. The
first thing most patient advocates with HIV or diabetes or CLL usually have in common is time: time to consider options and shop doctors and
therapies. Please check out the CLL Society’s
short welcome video
on that topic and more found in the bottom right corner
of our opening page.
us will do our doctor and treatment shopping online, so we look to reviews of
other authentic health care consumer that have “purchased” the therapies that
we are now considering. Patient advocates with a deep social media reach will
jump to near to top of our search lists.
thing we usually share is being confronted with many choices. There are a dozen
possible treatment options for rheumatoid arthritis (RA), but none without its
side effects and risks. There are a myriad of ways to control diabetes. Not one
approach is clearly best for all. Care for all CLL patients should be
individualized based on a huge web of personal and disease state factors. What
flavor of RA or diabetes or CLL do you have?
our doctors to throw out the cookbook approach to care and treat the person in
front of them.
One size does not fit all.
same holds true for most every chronic disease. We advocates want to get out
the information to our fellow patients to support their decisions. We can
provide real life and sometimes real time practical tips and handholding when
decisions are made, we fight to make sure that everyone has access to their
all work hard to provide some combination of support and information and
practical experience and finally access to the best personalized therapies.
are all subject to the reality that we have limits. We can get tired. We can
get sick. We can get overwhelmed.
thing we patient advocates share is the risk of burn out or compassion fatigue.
This is hard work, relentless work, often unpaid or under paid, where the
demand always exceeds the supply.
we are united by our drive to help, to make a difference in our fellow
patients who are patient advocates do indeed have much in common.
We are all in this together.
Volunteer Medical Director
Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.
Labels: Chronic lymphocytic leukemia, CLL, CLL Society Inc., compassion fatigue, healthevoices, patient advocates