Originally published by The Insighters® on October 18th, 2024: https://theinsighters.com/blog-posts/13 As I reflect on my HealtheVoices experience this year on the conference’s 10-year anniversary, I see a bastion of hope, of love, and of support for years to come. The love Johnson & Johnson and the HealtheVoices team has showered upon me is something I hold near and dear to my heart. And this year being the first year The Insighters® was able to partner has been especially meaningful to bring research opportunities forward to the patient community. I believe in inroads, in partnerships, and in camaraderie both in the patient advocacy community and amongst industry in the chronic illness…
-
- advocacy, affordable drug pricing, autoimmune disease, awareness, chronic illness, drug pricing, health insurance, pharmacy benefit manager
A Direct-to-Patient Model: How Online Pharmacy Marley Drug is Revolutionizing Drug Pricing
Sponsored by Medicure’s Marley Drug. All thoughts & opinions are my own. As patients, have you ever wondered if forgoing health insurance could perhaps save us money on prescription drugs? I honestly hadn’t considered it and this concept blew my mind when I first heard about it. For me, it always seemed like a no-brainer: go through my insurance policy to get access to prescription medications so I can contribute towards deductibles and meet my out-of-pocket costs many months later. But that can take forever and cost quite a lot of money…The reality is we might not have to do that and it might sometimes save us money to bypass insurance. I…
- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
I am NOT a Burden: A South Asian Perspective
The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks. Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and…
-
My 9/11 Story: Paying Kindness Forward
I still remember that beautiful sunny Tuesday morning. I had just moved into the city and started my freshman year at NYU Stern School of Business a little over 2 weeks prior. I remember being in the shower getting ready for class when I heard my roommate scream, “Tina, come out here!” Half asleep still and hair soaked, I sauntered over to her television. She pointed in utter shock at the screen showing the first tower up in flames after being hit by a plane. I stood there lifeless in shock watching the breaking news unable to register that this had happened a mile and half south of me. Soon…
- Ableism, acceptance, advocacy, awareness, caregivers, Colorectal Surgery, Crohn's, Dating & Relationships, Disability Justice, Fistulizing Disease, living with IBD, Ostomy, stigma, Ulcerative Colitis, Women's Health
Love Knows No Disability
Nine years ago today, the love of my life, Anand, and I were married in a beautiful Hindu temple with several of our relatives and friends in attendance from all over the world. It was a momentous occasion for me not just in a traditional sense but because of how close I had been to death just two years prior. But as beautiful as the wedding was, the process of getting married wasn’t exactly a fairytale or a bed of roses. You see, a couple years prior, I was freed of an extremely warped and diseased colon on the 4th of July, 2008 (see blog post: My Very Own Independence…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, Women's Health
I’m Chronically Ill & Depressed; So What?
You might be looking at this photo and thinking, “Oh, Tina looks like she’s having a great time enjoying beautiful weather in the park.” Can you tell an hour before this photo was taken, hubs struggled to get me to leave our home? Can you tell I had been curled up in bed crying? Can you tell it was next to impossible for me to get myself ready and out of bed that afternoon? NOPE. The truth is photos on social media and the Internet, in general, can be so deceiving. What you see here is a woman with Crohn’s and 37520572 other ailments smiling in a park because that’s…
- acceptance, advocacy, awareness, Body Positivity, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, stigma, Ulcerative Colitis
Lilly Singh’s ‘Choli Ke Peeche Kya Hai?’: My Anthem for Body Positivity
I still remember when the racy Bollywood song, “Choli Ke Peeche Kya Hai?” (Hindi: What’s Behind the Saree Blouse?), teased South Asian household television sets and AM/FM radios (yes, those used to be a thing). I was barely 10 years old and even though I couldn’t get enough of the song’s hypnotic beat, I felt tingling shame every time I heard its lyrics. So when Lilly Singh (a/k/a iiSuperwomanii), Punjabi-Canadian LGBTQ YouTube star and soon-to-be late-night TV show host, released her rap remake of “Choli Ke Peeche Kya Hai?” last week, I nearly fell off my chair. She didn’t just remake a Bollywood classic; she recreated a spectacle made for…