How did you answer that question when the news was your diagnosis? I would love to know that.
My own response has gone through a few changes. At first I hated the diagnosis so I didn’t talk about it. Then I decided to “be strong” and face the diagnosis by telling people. The reactions were always hard to take.
Anybody not going through my confusion and fear were on another side of a prison wall, and it just felt awful. I felt like I was in prison, a life sentence. People who visited me could, at the end of the visit, get up and get on with their lives, but I was stuck—a life sentence of MS.
That wasn’t the worst of it. I began to internalize the feelings and reactions that people had to my disastrous news.
Whatever wind of opinion blew my way caused me to enter that energy. I was vulnerable to other’s takes on my MS.
That made an impact on who I wanted to spend time with. At first I guarded my appointments with a commitment to boundaries that I never have known in my life. I needed to spend times either with myself or with people around whom MS wasn’t the end of life worth living.
I don’t know the answer for any of us, on any side of illness or health. We all are on our own journeys, and the events that affect a friend or family member become events in our own lives. We may react with anxiety, with relief, with denial, with all the things that the person carrying a diagnosis experiences. Speaking from the ‘inside’ of MS, our own confusion doesn’t always give us the resilience to receive well-meaning expressions of sadness, discouragement, even of hope. We may not flow as easily with the thoughts and energy of people around us, and to make it even more complicated, our bodies are not as reliable as before—at times we experience pains, limitations, exhaustion.
Speaking as an MSer, I can say that sometimes we, the significant people in others’ lives, may choose, out of necessity, to draw boundaries around interactions. If we can, we explain the reason why we need to give ourselves space to adjust. If we can, we do that, because it helps give our loved people a sense of patience, of trust that the friendship is still there, but on a different road, one that is a little more inward, and trust, on all of our parts, is the best thing we can offer. If we can’t put words to this need, we can only hope that somehow that message gets across.
But the answer changes. More on that next week.