Recently, I have been involved in two different projects. Both of which involved me sharing some of my experience of living with Multiple Sclerosis.
Progressive MS Webinar Series
The first is the Progressive MS Webinar Series, which I am hosting, and is in collaboration with the MS Society of Ireland. The first webinar, about Isolation, is now available on YouTube and I have shared this through my various networks. One viewer who is an advocate for Young People living with Parkinson’s watched it and noticed many of the experiences of people like me are similar for this other patient group. Of course, I asked it to be shared through that network, sharing the information.
This is incredibly powerful, as now we are using our collective knowledge of two illnesses to help improve the lives of both. This sharing should become commonplace. We are all patients and many of our experiences are similar, so why not learn from each other? We also have the possibility to act together, to improve something which impacts all our lives.
PPI Ignite Conference
The second project or event was my talk at the recent PPI conference hosted by the PPI Ignite network (you can hear the talk here). Again I was sharing my experience of MS, but also of being a Patient Advocate. This was targeted mainly at researchers, and people who would like to use their lived experience of an illness to improve the quality of research, patients involved in research.
Again, I shared this in my network and someone who is not a researcher, or patient advocate, heard my words, found them valuable, and is actively sharing this among their network. These words are now being listened to by a bigger audience, and so the message spreads. Was this intended by the organisers, probably not? Perhaps it was a desire. But now it is passing from one network to another.
The impact of sharing
We often hear about the impact of words, and how they can shape the future. When I embarked on this new medically enforced career, I didn’t think about how the experience I share could have an impact outside of my MS Community. Perhaps, subconsciously, I hoped, but now I am seeing it in action.
Now I see this, I am emboldened to try to do more, share more, and make deeper connections with people outside my community. To learn more from them, and to share my knowledge. Together with will make us all stronger, more resilient. The ultimate goal, for me at least, will be to improve the Quality of Life of all patients.
