Becoming Her Own Advocate: Dimika’s Challenging Journey to an Autoimmune Diagnosis

When Autoimmune Symptoms Don’t Add Up

Dimika didn’t expect to become an advocate. At first, she was simply trying to survive a slew of confusing symptoms—vertigo that wouldn’t go away, overwhelming fatigue, and unexplained joint pain. But over time, through misdiagnoses and fragmented care, she did something extraordinary: she became the expert on her own body. She became her own fiercest advocate.

Her journey, like so many of ours, didn’t come with a map. In her early thirties, Dimika started experiencing prolonged episodes of vertigo. They were so intense, they knocked her out of daily life for days at a time. Then, she started noticing intense joint and muscle pain, and without surprise, fatigue became a daily challenge, cloaking her like a weighted blanket she couldn’t remove. At first, she blamed herself—poor diet, not enough movement, too much stress. She changed her habits, she changed her job, and she waited, but nothing changed.

For years, doctors wrote it off as benign positional vertigo. She was handed nausea meds and dismissed. It wasn’t until 2016 that an ear, nose, and throat specialist ruled that diagnosis out. And then, an MRI showed lesions, but the radiologist noted they were unlikely related to a demyelinating disease. Eventually, she was diagnosed with vestibular migraines. Two neurologists agreed, but neither reviewed her scans nor dug deeper. And so, Dimika was sent home again, still searching for answers.

A Long and Confusing Road: The Challenging Journey to Diagnosis

In 2017, she stepped away from her career entirely as a forensic scientist, hoping to even further reduce the stress she had started to blame for everything. But her symptoms still didn’t stop.

The following year, in 2018, Dimika took her retirement plan and her body on an adventure—she relocated, moving to an entirely different state. She was cautiously optimistic that finding a new community, leaning into old friendships, experiencing a change in environment, and taking a new professional opportunity might give her body the relief it was so clearly asking for.

Upon establishing relationships with a brand-new care team, she underwent another MRI, and this time, it finally revealed enhancing lesions. On Halloween 2019, Dimika was diagnosed with multiple sclerosis (MS). She was 43 years old.

Let’s pause here for a moment. Not because the diagnosis made things easier for Dimika—it didn’t, or at least not right off the bat. Let’s pause because so many of us know what that moment feels like.

The gasp of clarity.
The heart-drop of permanence.
The relief that comes with a name.
The grief that floods in after.

How to Get Diagnosed with an Autoimmune Disease: The Importance of Persistence

Dimika was started on an oral disease-modifying therapy (DMT) and then moved to infusion therapy, but she continued to experience relapses. Her MRIs stabilized, but her symptoms didn’t vanish. She still struggled with balance, cognition, spasms, and nerve tingling.

“Nobody explained to me that DMTs work by quieting inflammation and slowing future disease progression, but they do not repair existing damage or work to reduce the symptoms that were already significantly impacting my life.”

She continued to suffer silently for a long time because not one physician had told her that she could ask for symptom relief, too.

As if that wasn’t enough to manage, then came the second diagnostic marathon.

In 2022, new and intensifying symptoms—specifically joint and muscle pain—suggested something more than MS. A rheumatologist initially diagnosed her with lupus. But treatments didn’t help, and after the third prescribed medication failed, Dimika sought a second opinion. It took two years and a persistent rash to finally get her an accurate diagnosis: undifferentiated connective tissue disease (UCTD) in October 2024.

Her story shows just how difficult it can be to get diagnosed with an autoimmune disease, even when you advocate for yourself.

Living, Learning, and Advocating Through Autoimmune Disease

Dimika’s story isn’t linear. It’s winding and full of detours and delays. But the power of her voice? That’s the part I want you to carry with you.

“The more I live with this disease,” she told me, “the more I’m able to advocate for myself.” Her voice is strong, sure, and filled with the kind of wisdom that only comes from walking through fire.

But she’s also quick to add that advocacy doesn’t mean she has it all together. She still grieves the version of herself that could do more, carry more, function more freely. She still has hard days—many of them. She’s still learning to navigate her changing body and shifting limitations. But she believes that every patient, no matter where they are in their journey, has the ability to speak up. To ask questions. To keep going. To be brave.

And that’s what she wants you to know most of all.

From Misdiagnosis to Empowerment: Finding Hope in the Autoimmune Journey

If you’re reading this and thinking, “I could never do what she did,” please hear her when she says:

“You can. Just take it one day at a time. You’re going to have your bad days. Give yourself time, just try not to stay in it too long. There’s so much more to us than what we thought we could be. It’s exciting when you let yourself develop into your new path.”

Dimika doesn’t minimize the pain, the fatigue, or the fear. She honors them. And then she shows us what it looks like to live anyway—to keep choosing hope, to keep fighting for answers, to become your own fiercest advocate, even if it starts with a whisper and not a roar.

Her journey reminds us that no one hands us a manual when our bodies start betraying us. We write it ourselves, one page at a time. And we pass it on, like she has, to remind others that even in the mess of misdiagnoses and medical gaslighting, there’s still room to be seen. To be heard. To be whole.

Even now.
Especially now.