Summary of Preliminary Research
Major learning points so far:
I am astounded how quickly I was forced to take a step back when talking to people from the MS community here this week. It seems like my assumptions from the start of the project are completely wrong. I have been lucky to talk to a variety of people this week. All of them seem to be disappointed at how little people outside of the MS community know about the disease. Worse, they know very little about how to handle MS patients, even if they happen to be in their inner circles as well.
It seems that the information is all available online. From medical descriptions, symptoms and medications to the lists upon lists of support groups that an MS patient can join. But according to the patients I talked to, the connection lacks to the personal side of things when they are looking for other MS patients’ personal experiences and are unable to find much that hols meaning to them.
It actually surprised me when one of the patients told me that she went to Barnes and Noble to get a book on someone’s personal experience with MS and the only one book she could find was published in 1980! Apparently, she has been hitting walls when it comes to finding good blogs or even support online because there are so many of them, it is very hard to look through the noise.
I also got the impression that the support of a patient’s inner circle from the very beginning of diagnosis is imperative in their on-going care. In both my conversations with MS patients, it became very clear that they were hurt when both their immediate families did not want to believe in the fact that they had been diagnosed with MS. It was also very hard in one of the cases for the person to have a long term personal relationship because they did not want to take care of her long term!
Images of places you’ve been to or books you’ve read:
People you’ve talked to so far:
Wendy Martinez: Support group leader/organizer for A New Generation of MS. Also an MS patient. Diagnosed 6–7 years ago.
TF: A patient recently diagnosed in April 2018 with MS.
Debby Bennett: National MS Society, Manager/Program Implementation & Engagement.
LS: A person outside the MS community. Someone who has no direct connection to MS. Did some research on it because his partner’s mother has it.
Next questions to research more:
- What exactly is a common pain point that all MS patients are facing right now? There seems to be a variety but I am trying to talk to more people to find out where that commonality exists the most.
- The point of view of the societies, foundations and associations. Their work is tremendous but are patients taking advantage of it all?
