Gettin' Grown – "My Body, My Opp (feat. Nikki)"

Host: Jade (“A”), Guest: Nikki (“B”)
Date: February 17, 2026
Network: Loud Speakers Network

Episode Overview

This episode of Gettin’ Grown centers on the lived experiences of Black women navigating chronic illness and the healthcare system. Host Jade is joined by Nikki (aka “Corporate Barbie”), who shares her complex journey with chronic autoimmune diseases, offering practical strategies and real talk for self-advocacy in medical spaces. The discussion weaves together Nikki’s personal health narrative, the brutal realities of being a Black woman patient, and tactical advice—delivered with wit, honesty, and the uniquely Blackity-Black tone that defines the show.

Main Discussion Themes

1. Black Women and the Medical System

[07:40 – 10:37]

• Jade grounds the conversation in the context of Black women’s historical and present-day struggles with medical racism and neglect.
• Reference to Shaja Washington’s death from medical negligence as a Black woman giving birth (“her family … ripped from her family. Her child will never know her in the physical sense.” [09:50])
• The importance of self-advocacy and community knowledge as survival tools.

2. Nikki’s Health Journey: Misdiagnosis, Lupus, and the Minefield of Chronic Illness

[13:23 – 21:39]

• 20+ years of complex health issues, initially misdiagnosed as multiple sclerosis, culminating in a lupus diagnosis after relentless self-advocacy and meticulous record-keeping.
• Description of lupus’ impact: daily pain, organ inflammation, cascading effects (“my immune system attacks connective tissue throughout my body … my organs are constantly under attack by my own immune system” [13:43])
• The challenge of “rare presentations” leading to fragmented, siloed care; specialists treating individual symptoms, not the whole person.
• The triggering effects of COVID-19 and “Long Covid” on her condition.
• Self-research: assembling all records, tracking patterns, creating a PowerPoint deck for her specialist ([18:40]).

Memorable Moment

"I put these records on my laptop. I looked at every blood test … I came up with a handful of diagnoses that I thought were likely. And I found a specialist at the Cleveland Clinic ... I actually took a deck, I took a PowerPoint deck into this appointment." — Nikki, [19:07]

3. Building a Care Team & Navigating Medical Bureaucracy

[21:39 – 27:29]

• Proactive “interviewing” of doctors, switching when bedside manner or willingness to discuss is lacking.
• The necessity for “natural curiosity” and partnership from doctors; willingness to review research findings together.
• Advocacy leading to successful interventions: vaginal birth after myomectomy by finding a willing OB-GYN ([25:23]).

Quote

"Treat finding your care team, if you are someone like me, as interviewing people the way that you would for any other job that you are hiring for." — Nikki, [21:55]

4. The Daily Grind: Symptom Management, Medical Procedures, and Unseen Labor

[40:32 – 56:58]

• Description of both visible symptoms (rashes, bruises) and invisible suffering (exhaustion, pain, cognitive changes).
• Early struggles to be believed even by family (“even with that, it was an uphill battle to even convince people close to me that, like, no, something's really, really wrong” [45:58])
• The emotional toll: learning not to “push through” and mask the reality.
• The elaborate medication regimen and life-changing effect of finally accessing appropriate lupus medication (Benlysta infusion).

Quote

"These people, intentionally or not, these people will let you die. They will let you die. They will let you suffer. They will let you languish. And you are the only person who will care about you the way that you do." — Nikki, [28:30]

5. Navigating Perimenopause and Compounding Health Realities

[57:15 – 63:37]

• The added challenges of perimenopause layered on top of chronic illness.
• Importance of established relationships with care providers for rapid response (“[OB-GYN] immediately was like, yeah, say less. We need to do something about this.” [59:06])

6. Self-Advocacy: Practical Strategies & Bullet Points

[65:35 – 73:53] Nikki provides actionable self-advocacy strategies:

• Fight for Yourself: Don’t give up or settle; your life is worth agitating for.
• Build a Care Team: Seek providers who listen, are curious, and see you as a partner in care.
• Presentation Matters: Especially early on, show up to new appointments “like you are loved,” as anti-Black biases in medicine are real.
• Follow Up Behind Care Providers: Read your own medical records, results, and surgical notes (“I found so many things in the records that somebody put in a clinical note ... that no one told me” [68:52]).
• Become an Expert on Your Conditions: Stay informed, research, and bring new findings to your team.
• Acknowledge & Work with Your Privilege: Nikki acknowledges the role of insurance, education, and mental capacity in her ability to advocate, recognizing not all have this access.

Memorable Quotes

"Show up like you are loved and cared for and show up like you have pride in yourself. And I hate to say that, but they do not treat us the same as other people.” — Nikki, [67:44]
“When something hits your MyChart, go read it.” — Nikki, [70:20]

The Psychological Toll & Relationship with Body

[34:21 – 38:59]

• The fraught relationship with a betraying body: “It is a really hard existence when your ultimate biggest op is your own body.” — Nikki, [34:28]
• Acceptance, begrudging respect, and humor as survival tools: “Sometimes you want to get in the car and you want to drive away from it all and say this shit, but the bitch is coming with you.” ([35:33])
• The twin pulls of frustration (“I just want to be normal”) and gratitude.

Advice for Others

To Young Black Women Entering a Chronic Illness Journey
[83:59 – 86:24]

• Toxic positivity isn’t helpful; some days, it just “sucks.”
• “You are stronger than you know, whether you want to be or not … you will be [here], as long as you are physically able to and continue to make the choice to be every day.”
• Radical boundaries are essential; learn to say no, guard your energy, and accept your needs.

To Those Who Love & Support People with Chronic Illness [86:24 – 93:15]

• Believe them. Believe their pain and fatigue.
• Do not compare your tiredness or pain to theirs (“do not say, I’m tired too, because you have no idea” [92:19]).
• Offer practical support: go to appointments, pick up household slack, avoid giving unsolicited advice or random cures.
• Respect their boundaries and need for rest (“If someone says ‘I can’t,’ accept that and step in and step up.” [88:08])
• Don’t offer “miracle” cures or compare your auntie’s condition.

Notable Quotes

"If you are in a relationship with someone who is not able to do things that they used to be able to … accept that you're gonna have to pick up some slack … You really have to have a giving spirit." — Nikki, [87:02]
"Nobody wants to feel better than we do. We are doing everything in our power to feel better." — Nikki, [90:24]

If Nikki Could Redesign Healthcare

[77:47 – 80:23]

• Advocate for a standard of care mirroring ICU for multifaceted cases: a team of specialists who consult together, baseline system checks for all new chronic/complex diagnoses, ongoing multidisciplinary management.

Notable Quotes & Memorable Moments

• On self-advocacy:
  “I respect doctors immensely … where my knowledge is equivalent to them is my own body that I have had for my entire life.” — Nikki, [29:19]
• On surviving out of spite:
  “There are a lot of times when where I am existing off of sheer spite and just, like, negative vibes. Like, I'm just here because I want to prove that I can still be here.” — Nikki, [80:33]
• On the price of survival:
  “My infusion is $5,000 a month … if I didn't have insurance, it's $7,000 … Last week I spent $500 out of pocket for imaging and medications.” — Nikki, [94:05 & 95:10]
• On beauty and spite:
  “I'm going to be a bad bitch, period … That is a mechanism of spite. It is pure spite.” — Nikki, [83:54]
• On health information overload:
  "Don't talk to me about a turmeric pill, bitch. I took turmeric pills. My fingertips were staying yellow. It did not fucking help. Shut up." — Nikki, [91:00]

Practical Self-Advocacy Strategies (from Nikki)

[66:13 – 73:53]

1. Be relentless: Don’t settle.
2. Build (and fire) your care team as needed.
3. Look the part—especially early on.
4. Follow up: Read all of your records and labs yourself.
5. Become a student of your body and your conditions.
6. Leverage trustworthy friends/family to help understand medical jargon.

Timestamps for Key Segments

• [07:40] – Black women’s medical discrimination & introduction to Nikki’s story
• [13:23] – Nikki details history of symptoms, misdiagnosis, and self-advocacy
• [19:07] – The PowerPoint deck for the Cleveland Clinic
• [21:55] – Building and “interviewing” her care team
• [28:30] – “These people will let you die”: the necessity of self-advocacy
• [34:28] – “My biggest op is my own body”: psychological realities
• [57:15] – Added challenge of perimenopause
• [65:35] – Bullet-pointed self-advocacy tips
• [77:47] – “Redesigning” the healthcare system
• [80:33] – The “spite survival” philosophy

Where to Find Nikki

• Threads: @silent.perhaps – “I am more than happy to answer questions or talk to anybody or encourage anybody, you know, on this journey.” [97:08]

Tone, Style, and Final Notes

This episode is unfiltered, compassionate, and deeply informative. Jade and Nikki blend warmth, Black cultural specificity, gallows humor, and plenty of side-eye for the medical industrial complex. For Black women dealing with chronic health issues—and those who love them—it’s an essential listen, full of practical wisdom and solidarity.

Episode title idea:
"Silent, Perhaps (Shut the F** Up a Little More)"* (see [97:08]), or Jade’s alternate, “You, Whoever You Is, You Too” — both nodding to the episode’s big sentiments about survival and boundaries.