We recently announced the 2016-2017 Team of Advisors, and now we’ll be introducing each member so you can get to know them better as they kick off their year-long term. First up is Jim (jangrilah), a member of the MS community. Jim is a new grandfather, a husband and an international executive and leadership development and change management consultant.
He sat down with us recently to talk about finding appreciation in the “upside-down” reality of life with MS. Below he shares his experience advocating for himself and how he built a strong relationship with his doctor.
What gives you the greatest joy and puts a smile on your face?
What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
Mobility challenges limit what I can do/where I can go. In the U.S. things are pretty good; overseas, people tend to recoil from any appearance/behavior that strays from the “norm.”
How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
MS produces a wide variety of often invisible but strange and obtrusive sensations and symptoms that aren’t described in the owner’s manual that came with your body. Creates a new normal and a new sense of reality, and makes life a bit like being an undercover spy.
If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
Take a deep breath. Learn what you can about the condition, but mostly keep your head about you: don’t allow the shock to drive you crazy and/or make you feel that things are worse than they actually are. Learn to appreciate the upside-down ways in which it can help you focus on what’s REALLY important to your quality of life, and take an interest in the unusual ways in which your body can change from day to day, even moment to moment.
How important has it been to you to find other people with your condition who understand what you’re going through?
Actually, this hasn’t been very important for me. I’m much more interested in how the things MS makes me experience give me new/unusual perspectives on life and relationships that others can learn from.
Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).
The oncologist who diagnosed my Chronic Lymphocytic Leukemia was highly recommended to me by my GP based on his clinical expertise. But he came initially across to me as arrogant, cold, in a hurry, and not the least bit interested in helping me absorb the news emotionally. At the beginning of our second appointment, I took him aside, praised his clinical expertise, insisted that, even so, we could only proceed together if he listened to something I had to say, and then — after he signaled his willingness to hear me out — described the kinds of interaction/treatment I would need him to work on if he wished to continue treating me. Over the next several months, I “taught” him how I wanted him to interact with me; he worked at learning, and we eventually became good friends.
How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
It has alerted me to possible new treatments and mobility solutions.
How well does PatientsLikeMe communicate its mission and activities to members and stakeholders?
I somehow missed some of the most unique and valuable things that PLM brings to the table, so I’d like to see the Team of Advisors work with PatientsLikeMe staff to enhance and clarify PatientsLikeMe’s messaging.
How should PatientsLikeMe make the most of its Team of Advisors?
A lot more could/should be done to set the Advisors up as a true TEAM (as opposed to a collection of individuals serving as sounding boards) who adopt and pursue their own projects in collaboration with PatientsLikeMe leaders/staff to undertake valuable enhancements to the site and its patient community that might not yet be on PatientsLikeMe’s radar.
What made you want to join the PatientsLikeMe Team of Advisors?
I have personally benefited from interactions with PatientsLikeMe members but also have observed ways in which the site could provide better support and more reliable information. Also, numerous family and friends have harped on how much they admire how I handle my various conditions: I figured the Team of Advisors might be an opportunity to see if I actually had anything to offer that might be of value to other patients.
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