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?” shares Dr. Christa Hutaff-Lee in our 2022 RNDS presentation, How to cope with grief, anxiety, and loss? How to talk to others about my diagnosis?

As we head into NMOSD, MOGAD, ADEM, TM, and AFM awareness months this year, 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 response 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 last April, 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.”

In the 2022 RNDS presentation, Transitioning From Hospital to Home, Janet Dean, MS, RN, CRRN, CRNP of the Kennedy Krieger Institute and SRNA Peer Connect Leader, Paul Garret, discussed the transition both for Paul as a person diagnosed with TM and the impact on his spouse. Not only do people diagnosed find a “new normal”, but partners, family members, and loved ones do too. You can listen to their full conversation here. Additionally, you can check out the Ask the Expert podcast episode, Newly Diagnosed with a Rare Neuroimmune Disorder: What You Need to Know, where Drs Olwen Murphy and Ram Narayan discuss different acute treatments and diagnostic process, address questions about long term care, follow up appointments, and more.

Want to share about your “new normal”? Consider sharing your own story or the story of someone you know who is affected by a rare disease. This can be a powerful way to raise awareness and encourage others to get involved in advocating for these conditions. You can share your story on social media, submit a written piece for the SRNA blog, film a video for our #ThisIsMe campaign, or tell us why you think raising awareness matters here

SRNA invites you to our 2023 Rare Disease Day event – the #Rare Roundtable. Join us on Tuesday, February 28, and hear from our special guests as they open their hearts, share their rare experiences, and discuss how they’ve embraced a new life with new normals.