I guess part of the reason I stayed at Medscape for as long as I did (8 years) was because I enjoyed working on content for healthcare professionals. Doctors, nurses, pharmacists – I met many of them “virtually” or otherwise. Some of them really showed me compassion not only as a colleague but as a person trying to navigate their way through the healthcare system & give back to others & make sense of my own situation.
One of the true pleasures came from knowing Dr. George Lundberg for several years & recently reconnecting with him on Facebook. He’s so brilliant & on the pulse it’s scary. He could make your mind spin in a meeting, keeping up with him; he moves so fast. He was such a well of ideas. But such a genuinely caring human being with so many interesting stories to share. This is only one example of how many audiences professional & otherwise he speaks to and reaches when he weighs in on something. I picked this example because he’s also not afraid to use his experiences not solely as a doctor, but as a fellow navigator in the system to expound on his ideas.
There were a few others who I learned from & found new ways to “geek out” on healthcare issues. I became so interested in bioethics watching Arthur Caplan taking on issues that needed to have dialogue but so many others were reluctant to take on because they were hot buttons or just not discussed at all. Or they were politically charged. It’s funny because I saw him once in action at a shoot in Philadelphia when he was at UPENN. I had just moved to Pennsylvania then but was still working in New York. Now it seems we’ve switched places. He’s at NYU now. I came across this gem recently & was given some nice food for thought. The dates are sketchy if it was actually this was the particular video or not that I first saw him in action but it was a similar topic with an equally clever response. Whether you agreed, partially agreed, or absolutely disagreed, you always walked away with something to consider or at least made to think on, even if you were upset.
Maybe the other reason Medscape appealed to me for so long was because through my own experiences with rare disease, I always saw physicians & healthcare professionals in our community as people, whether they were clinicians or researchers. But also other professionals working hard to support me as well. All of them however, met me as an equal first because they saw I was trying to make a difference. I wanted that to carry over into my career if it was possible. I was afforded that opportunity at times and it meant something.
This is common in rare disease sometimes because the circle may be small, the same people treating you may be also actively researching your disease to find a treatment or make your quality of life better. I still have several of these people looking after me in not just a research or clinical sense but as a person. In fact, serving on the Congressionally Directed Medical Research Program (CDMRP), my input was valued & welcomed just as much if not more as study design or other professional research elements. It helped us all to see the big picture more clearly.
This feeling & experience of seeing physicians as people was no different at times than building professional relationships with people like Michael Sorenson, a Fargo based anesthesiologist, who told me a few times how grateful he was for me reaching out to him to start a blog while I was still at Medscape.
He’s too done some pretty important side work in medicine on a volunteer level & that’s why I tapped him to do a blog for the Anesthesiology site when I was there because it was an interesting blend of professional perspective & missions work. It was because of him & others I had built relationships with over the years that the seed was planted at some point to start a blog of my own. I just hadn’t found my voice yet. (My friends later helped me find it in August with this).
So I guess when I see articles like this, I can relate to healthcare professionals not just from my own experiences but the demands facing them as well. That interview with Michael Edmond really spoke to me because while I may not be a medical professional, I found a lot of common ground to relate to professionally & personally from both sides of the spectrum. The very profound professional struggles outlined here are also somewhat universal to people with a strong work ethic, in particular those of us with invisible illnesses. Moreso, when that invisibility also fades & then morphs into prominently apparent they become more demanding & prominent.
I’ve had several jobs where I had immense guilt (because I am a team player) for needing to temporarily put my workload on others when I fell ill. It was a fallacy of course, but something I struggled with for years, though I never begrudged anyone if they had to do the same. This is common in any healthcare associated job & this was only one struggle that was woven into the thread of several jobs. I felt it when I left and changed sectors & moved to insurance. People were relying on me for claims information & important assistance on a daily basis so I can relate to the feeling of doctors or professionals never feeling that they can truly call out. I found that hard to let go of sometimes. Especially when I was on more than one close knit team where everyone was carrying the weight and working hard.
Part of the reason I changed sectors ultimately was lack of opportunity. I had several hybrid jobs where I did several duties in a day but not enough of one duty to really stay competitive or land a new position. That combined with a lack of advanced degree really made me feel challenged as a professional at times.
Yet, what drew me to working in insurance were difficulties & struggles with understanding my health plan & claims issues. It turns out according to this article, even doctors (or other professionals) are not immune to feeling the weight of bureaucratic nightmares in their personal as well as professional lives. Many times it felt like if I had to put in a full day of fighting hard for someone and then fighting for myself it never seemed that there was any time “off-the-clock”.
Maybe I’m more forgiving & patient too because I seek out doctors & other professionals who really value participatory medicine (or even if they aren’t experts in my disease per se) & I see them doing their best to address my needs. They are not afraid to research; but if I show them a study, I’m considered empowered & not a pain or a problem.
They like it when I do my homework because I understand they have other patients & might not always have all the time they’d like to research on their own. Plus I have better conversations that lead us both to better decisions. They encourage this dialogue.
I know with rare diseases, there are no rules or playbook for any of us in dealing with them whether that professional or team sees one patient, 50, or more in a day. The only way to stay ahead of illnesses like LAM & TSC is by working together.
I believe in part that’s why it took 12 years to get me to “transplant world”, and not sooner. Furthermore, this is why I was not put off when it was explained why I needed to wait an extra week after my evaluation for my follow-up appointment. I know the level of time, investment, & compassion my transplant team shows me.
I feel blessed to have so many mentors & friends helping me navigate the system along the way all these many years both in a professional and personal sense. When I can; I try to pay it forward. In today’s environment, it’s becoming more & more of a challenge for everyone to navigate the system no matter what side of the experience they are on at any time.