When you’re newly diagnosed with an autoimmune disease it’s hard to catch your breath. Being diagnosed with something like rheumatoid arthritis, lupus, or multiple sclerosis can absolutely knock the wind out of you! It’s not just your body that’s affected; your identity shifts. In a moment all your plans change and your emotional world can feel like it’s been turned upside down.
We asked two thought leaders a vital question:
“What is one important psychological or emotional step individuals can take when coping with a new autoimmune diagnosis?”
Their insights were not only compassionate but they were also grounded in personal stories and real emotional wisdom. Here’s what they shared, with reflections and breakdowns to help you take that first brave step forward.
See Also: Is There a Correlation Between Chronic Illness and CPTSD?
1. Let Yourself Grieve the Life You Thought You’d Have
Nick Bach, psychologist and owner of Grace Psychological Services, LLC, shared a powerful reminder:
“I think one of the most important emotional steps when coping with a new autoimmune diagnosis is allowing yourself to grieve.”
This isn’t a concept we hear often enough. Many of us feel we need to immediately bounce back, be strong, or focus on being positive. But Nick emphasizes that emotional honesty is the first step toward healing after being newly diagnosed with an autoimmune disease.
“I’ve seen so many people, including myself, struggle with the emotional weight of a life-changing condition because they feel like they have to be ‘strong’ or ‘positive’ right away.”
He explains that a diagnosis like lupus or RA often means grieving the loss of certainty, control, or even the future you had envisioned.
“But the truth is, getting a diagnosis like rheumatoid arthritis or lupus can feel like a loss—the loss of certainty, control, or even the life you thought you’d have.”
Then Nick shares a personal story that hits home.
“I remember when a close friend was diagnosed with multiple sclerosis, and at first, she tried to push through as if nothing had changed.”
“But eventually, she realized she needed to acknowledge her emotions—anger, sadness, fear—before she could start adapting. That moment of allowing herself to grieve became the turning point where she could focus on building a new version of her life, rather than holding onto what she lost.”
This part of Nick’s insight is so important: You can’t rebuild something new until you’ve honored what’s been lost.
“So, I think the best thing someone can do is give themselves permission to feel everything, without guilt. Only then can true emotional healing begin.”
Key Takeaway: You’re not weak for grieving. You’re human. Letting yourself feel those early waves of sadness, fear, or anger isn’t giving up, it’s making space for what comes next.
2. Find Strength in the Stories of Others
Danielle Dahl, Co-Founder, Resilient Stories, focused on the power of connection:
“One of the most important emotional steps when coping with a new autoimmune diagnosis is finding support—especially through the experiences of others.”
Right away, she hits on something so many people feel: isolation.
“Receiving a diagnosis can feel isolating and overwhelming, but knowing you’re not alone can make all the difference.”
“Reading or hearing personal stories from others who have navigated similar challenges can provide not just practical insights, but also emotional reassurance.”
“It helps normalize the rollercoaster of emotions—grief, frustration, hope—and reminds individuals that resilience is possible.”
She suggests diving into memoirs, blog posts, online communities, or support groups not necessarily to “fix” things, but to feel understood.
“Support groups, memoirs, online communities, and personal essays can all be powerful tools for processing emotions, learning coping strategies, and reclaiming a sense of control.”
Danielle even shared an example from her own work. Her team published a piece on living with autoimmune diseases—and the impact was massive.
“We put together an article once about ‘living with an autoimmune disease,’ and it had such a profound impact on those who contributed. They shared it on their social pages and got so much love and support from people who knew them, but had no idea of their struggles.”
When people open up, others are encouraged to do the same. The ripple effect is connection, healing, and even advocacy.
“Also, when we see that others have faced the same uncertainty and built fulfilling lives despite their diagnosis, it becomes easier to believe that we can, too.”
And maybe most importantly?
“Finding stories that resonate can be a first step toward self-acceptance, advocacy, and a new path forward.”
Key Takeaway: You don’t have to figure this out alone. Seek out people who’ve been where you are and they’ll remind you that it’s possible to move forward, even when the future feels uncertain.
Quick Recap: Your First Emotional Steps After an Autoimmune Diagnosis
1. Let Yourself Grieve
💬 “Give yourself permission to feel everything, without guilt.” – Nick Bach
- Grieve the version of life you thought you’d have
- Feel your emotions fully—anger, sadness, fear
- Healing starts with emotional honesty
2. Find Strength in the Stories of Others
💬 “Knowing you’re not alone can make all the difference.” – Danielle Dahl
- Read memoirs, blog posts, or join support groups
- Personal stories help normalize your experience
- Connection creates space for hope and resilience
Final Thoughts: You Don’t Have to Have It All Figured Out
Newly being diagnosed with an autoimmune disease brings real emotional weight. You are allowed to grieve, pause, rage, cry, and then slowly begin again.
As Nick said, give yourself permission to feel. As Danielle emphasized, seek comfort in community and shared stories.
These two steps: honoring your pain and connecting with others can be the strongest foundation for the healing ahead.
💬 What helped you after your diagnosis? If you’re willing to share your story, it might help someone else take that first step too. ❤️
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