Nekia Nichelle Bravely Speaks Up About Living with New Sjögren’s Diagnosis 

Nekia Nichelle, business owner and expert entertainment and lifestyle journalist, can simply do it all. As Just N Life’s very own Editor-In-Chief, she has the rare ability to wear multiple faces a day when she needs to, and check off everything on her to-do list with ease. Her most recent and challenging face to wear? Getting diagnosed with a serious autoimmune disease— Sjögren’s. With March being the official month of Autoimmune Disease Awareness month, what better time than now to sit down and have a chat to discuss the importance of shedding light on autoimmune disorders; which turned into more of a deep, inspirational discussion, thanks to Nichelle’s openness.

Sjögren’s (pronounced SHOW-grens) is a chronic, autoimmune disorder that causes dryness of the salivary glands that are responsible for producing moisture, as defined by Mayo Clinic. But if you ask Nekia, that explanation of the illness is far too vague and underestimated. Immediately starting off our interview with a cup of tea in hand, that’s just one of the many new norms she has learned to live with and navigate.

“This is part of the autoimmune disorder. I’m always having to drink mint tea or anything with lemon. It really helps with the salivary glands and dryness,” Nekia Nichelle explains.

Talking in meetings all day and doing an interview may seem like a normal daily task with minimal effort to some people, but Sjögren’s can take, “normal,” daily tasks and magnify their difficulty, with symptoms like trouble swallowing while speaking, fatigue, debilitating joint pain, and brain fog. 

Nekia Nichelle is adamant though, that simply because she suffers from an invisible illness, she doesn’t ask that people treat her differently and give her pity of any kind. All she asks for is understanding and patience.

“Grace is what I’m looking for. Just because you don’t physically see me in a hospital bed, I feel like you should still have grace for me, because you don’t know what’s going on with me internally,” Nekia says.

This happens all too frequently unfortunately, and as Nekia brings up, much like the late Chadwick Boseman health incident scandals that raided the tabloids while he was sick with colon cancer behind closed doors.

Being sick in a hospital bed isn’t far off from Nekia Nichelle’s past experiences, though. She recalls perhaps one of her first possible complications resulting from Sjögren’s, far exceeding the dry eyes and mouth aspect of the disease.

“In 2022, I had a pulmonary embolism, so I had blood clots in my lungs. That was a huge health scare and started opening me up to more severe health concerns.” Nichelle continues, “You’re trying to establish your new normal and it makes me kind of sad. Sad, angry… I went through a bunch of different emotions.”

For an average healthy person, getting an official diagnosis may seem like the final objective, and everything gets better from there as you go on about your life. With Nekia Nichelle’s experience, that couldn’t be further from the truth. Sjögren’s has not only affected her emotionally, but physically as well.

“I’ve done every diet you can think of. I’ve worked out since I was 10 with jazzercise, CrossFit,” Nekia Nichelle says, “And I was having issues breathing. I felt like I was going to die.” 

Commonly associated with Sjögren’s, Nichelle says she is also at an increased risk for developing lymphoma, among other health conditions.

“You’re opening yourself up to gum disease and cavities,” she explains, “I could potentially go blind or I could get a degenerative eye disorder that affects my vision.”

With the upcoming spring and summer months, Nichelle also has to stay on top of her health with the symptoms that warmer weather can bring on.

“Imagine you’re in a dehydrated state; imagine what your body can do. It’ll start to shut down. It starts to utilize other things in order to combat the dehydration,” Nichelle describes.

Having this newfound diagnosis in a matter of just three weeks, Nekia still stays optimistic by using her support system as a shining beacon; including her fiancé, mother, and even her Just N Life family. From relieving her foot pain with nightly massages, to accompanying her to different doctor’s appointments, her fiancé has been her number one supporter since day one. 

Nekia Nichelle gushes, “I am super grateful for my fiancé. He has honestly been here every single way for me.”

And according to her, the Just N Life team is no exception either, reminiscing when a member of the team sent her a get well soon card.

“They were really supportive and in my corner.” Nichelle goes further to say, “It’s thoughtful things like that… I can’t even put into words how special it is and it makes me feel like okay, I’m not alone.”

Upon closing the interview focusing on her new health journey, the question of if Nekia had any lasting advice for anyone out there who is fighting the same fight, and struggling to be heard by medical professionals emerged. From just her encounters alone, it isn’t always easy finding a doctor who will truly listen to a patient’s story and symptoms, especially if the patient is a woman of color. The biggest takeaway? Find someone who cares, even if that means shuffling through multiple different doctors.

“You want to find a team where it’s a collaborative effort,” Nekia Nichelle stresses. “Advocating for yourself, speaking up, making sure you’re being treated with care even from the front desk person… there are people in services out there who can advocate on your behalf.”

If the doctor doesn’t remember a certain blood test or scan of yours? Nekia Nichelle has you covered. She offers a great tip by suggesting you bring a folder full of your medical records, scans, and any new symptoms you experience. 

While Sjögren’s shouldn’t be taken lightly and requires lifelong medical monitoring after diagnosis, your life doesn’t stop just because Sjögren’s started. Nekia Nichelle bravely admits that she still doesn’t have all the answers to navigating life with an autoimmune diagnosis, but that won’t stop her from living each day to the fullest and pushing forward.

“It’s a journey. I’m still learning as I go,” she says. “Finding a healthy balance is something I’m truly working on.”

Nekia Nichelle doesn’t pretend to have the perfect, scripted answer. She doesn’t claim that she has the fool-proof approach to managing her business, personal life, and health all at once; and that’s the kind of honesty that has the power to reach hundreds of women also struggling with Sjögren’s. She’s persistent in just trying her best now, and her best is more than good enough.