When I was initially diagnosed, I struggled with learning how to inform people of my MS. I was afraid, and kept it as secretive as possible. As I learned more about the impact MS has on my life, I began to identify with it more as a part of who I am. This “bonding” or acceptance of this separate entity being so closely dependent on my health is something I’m trying to healthily nurture. For now, I have gotten past the initial bit of telling of people that I live with MS. But with my first hard relapse, I’m now struggling with a new (but related) subject: navigating a discussion about my MS.
My close circle knows that I live with MS. But when I am coping with a relapse or pseudo-symptoms, I’ve found navigating this discussion to be a challenge. Many are afraid to ask questions to better understand the situation, and some quickly jump out of the conversation because it’s just too challenging or awkward. I understand how hard it can be to gracefully maneuver such a heavy-loaded conversation, but I am finding that this fine line between wanting to sound sympathetic but not like an uneducated fool is unnecessarily HARD. While I try to dance this dance with many individuals, the one thing I am noticing is that I must take the lead in the conversation. People often aren’t sure what to say and thus, have nothing to say. I need to demonstrate that it is okay to ask questions and simple fact-finding is not offensive.
I’m hoping these conversations will get easier as I speak out more and build the correct conversational foundation for others.
And then, the rest is up to them.