About This Episode

No one should ever hear a doctor say their illness would be “easier” if it were cancer. Sakshi Chauriwar (@lupuswithsakshi) did. Diagnosed with lupus at 16, she’s now 24, working a full-time corporate job and also living with avascular necrosis (AVN), a condition where bone doesn’t get enough blood supply and can collapse. Karin, a fellow lupus warrior who has also had AVN, talks with Sakshi about her path to diagnosis, the comment that made her switch doctors, and why she wants every warrior to get a second opinion.

Key Takeaways

• Sakshi’s path to a lupus diagnosis took about a year and began with a dermatologist visit that missed the bigger picture.
• A hematologist told her it would be better if her biopsy showed cancer “because lupus is incurable,” and she changed doctors.
• She balances a corporate job with daily joint pain, and being open with her manager has helped.
• She tracks her symptoms before doctor visits so nothing gets lost.
• Her biggest piece of advice: get a second opinion, and a third if you need it.

Lupus at 16

Sakshi’s first symptoms started when she was a teenager, and it took around a year to get answers, starting with a dermatologist appointment that didn’t connect the dots. She talks about getting through the hardest months and how lupus changed her sense of who she was.

“Is that really how you talk to a patient?”

Years later, a PET scan showed swollen lymph nodes and lesions on her bones, and her rheumatologist sent her for a second opinion with a hematologist. What he said stayed with her. “He basically said that it would be better if the bone marrow biopsy showed cancer, so that we can treat the cancer, because lupus is incurable,” Sakshi said. She was sitting there with her father. “I was like, what did I just hear? Is it really how you talk to a patient?”

She’s careful to say that not all doctors are like this, and that she’s had good experiences too. But that comment is part of why she’s so passionate about patients finding care that respects them.

Working a corporate job with daily joint pain

Sakshi works full time in a corporate role while managing joint pain every day. Being open with her manager has made a real difference. She also tracks her symptoms ahead of appointments, which helps her give doctors a clear picture.

Visible and invisible symptoms

Lupus is often invisible, but AVN left Sakshi limping for years, so she’s experienced both sides: people assuming she’s fine, and people staring. “No one can tell just by looking at our picture that we have an illness, but we do,” she said. Her parents have been a steady support, and she’s helped educate them about her condition along the way.

Get a second (and third) opinion

When Karin asked for her advice, Sakshi spoke from hard experience. “I only trusted one doctor,” she said, and she now has hip implants. “If you’re not sure with your doctor, please take a second opinion, third opinion. You can take as many as you want until you get satisfied with the doctor’s answer.”

What invisible strength means to Sakshi

“Invisible strength is, we look completely normal from outside, and behind it we deal with joint pain, fatigue, fevers,” she said. People see a photo and think she looks fine, “but then they don’t know what it took me to get prepared to just go out normally.”

Free resource: Grab the free RESET workbook mentioned in this episode: https://invigorateyourjourney.com/reset-workbook/ and connect with Sakshi at instagram.com/lupuswithsakshi.