Embracing a “New Normal”
The complexity surrounding the acceptance of a rare neuroimmune disorder diagnosis is something we’ve encountered frequently within our community. For some, there’s a sense of “grief” that occurs. Grief for independence, for old relationships, for the “old life” they had before. This grief can also accompany feelings of anxiety, complete overwhelm, and lots of questions about the future.
“It’s very easy to get into a mind frame where you focus on what you can’t do, what looks different from before. And so, there’s this idea of really reframing that and saying what can I do now that’s similar to what I was doing before?” shared Dr. Christa Hutaff-Lee in our 2022 RNDS presentation.
It is important to acknowledge the ways community members are moving forward and embracing new activities, routines, and futures. We recently asked our community on social media: “What does ‘new normal’ mean to you?” Here is what they shared:
“Knowing my body moves and reacts differently without judging myself!”
“Resting a lot in between doing chores. Teaching myself how to crochet with vision loss.”
“It means giving myself more grace as everyday presents different challenges.”
“Being able to find ourselves and navigate our lives around our diagnosis”
Embracing the changes that come with a diagnosis doesn’t mean never having “bad” days or moments. “This idea of processing emotional responses is really important. Whenever you hear information about your health or potentially bad information, there’s going to be a rollercoaster of emotions, and giving yourself permission to feel all of those emotions and to not feel guilty about them I think is really important. I think it’s very normal to feel angry, or scared or anxious about all of these things, and giving yourself some space to feel those is very valuable. But it’s also important in this moment to seek emotional support and that may be from families, or friends, or potentially from professional support,” says Dr. Hutaff-Lee.
In her blog story with us, SRNA’s Director of Research and Programs, GG deFiebre shared, “I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM. Life may be more challenging in some ways due to the inaccessibility of the world and people’s perceptions, and I certainly have bad days, but overall, I am quite grateful for the life I have.”
