042: Aditi Juneja – Living with Epilepsy & Self-Advocating as a WOC

Aditi Juneja is a lawyer, writer, and organizer living with epilepsy. She is the creator and host of Self Care Sundays, a podcast about self-care for communities of color. With past guest T. Sydney Bergeron Mikus, she is also the co-founder of the Invisible Illnesses Support Circle at The Wing in NYC. While at NYU law school, she co-created the Disability Allied Law Students Association (DALSA). In 2017, she also cofounded the Resistance Manual, a nonpartisan organization crowdsourcing content on legislative and policy issues and offering it to the public at a basic reading level in order to make it accessible to all English speakers. This project was created in partnership with StayWoke; as part of it, she also co-created OurStates.org. In 2018, she was selected by Forbes as one of the 30 Under 30 in Law & Policy. She is currently the communications manager at Protect Democracy. In this interview, we talk about what it has been like to manage her seizure disorder throughout her early life and career, and how we can make healthcare more accessible. 

Listen in as Aditi shares… 

- how her mom discovered that she was having petit mal seizures when she was 3 years old – but didn’t share this news with her until she was older 

- that she had her first grand mal seizure in 2001 – shortly after 9/11 

- that she noticed triggers for her grand mal seizures – and realized the need for medication to dampen the triggers 

- that she has spent a lot of time adjusting her medications to stay on top of her symptoms 

- evidence of bias in the medical industry: that she was able to see specialists sooner because of networking connections 

- that she’s been seizure-free for four years now – and she hasn’t gone this long without a seizure since high school 

- that she ended up on a medication black-boxed by the FDA – meaning that it carries a high mortality or health risk rate – but that she’s been absolutely fine on it (and, as it happens, the odds of a negative reaction are low) 

- her attitude about her health and quality of life: “if you’re going to live a life, it should be worth living – and be the one you want” 

- that she hasn’t been injured during a seizure, but she knows plenty of people who have been 

-  that most epilepsy medications are downers – but she happens to be on one of the few uppers 

- that she has been diagnosed with idiopathic generalized epilepsy (like 1/3 of epilepsy survivors) – because her family history of epilepsy is scarce at best 

- that she has always been her own health advocate and been open to educating others about her condition – and her parents encouraged her in that direction 

- do’s and don’ts for helping folks having seizures: lay them on their side; if more than 2 minutes, call 911; move dangerous furniture; don’t restrain them; and don’t put anything in their mouths 

- that she has learned to tell teachers, employers, etc. about her condition early on – so they know how to handle a seizure if it happens 

- that she has an aura that warns her of an oncoming seizure, and she’s able to take the appropriate precautions 

- the importance of lifestyle choices and boundaries – especially when it comes to prioritizing sleep – in managing her symptoms 

- that she got involved in healthcare advocacy during the ACA repeal debates, and especially after the recent death of Jakelin Caal in CBP custody; she was also involved in the disability community in law school at NYU with the foundation of the Disability Allied Law Students Association (DALSA) 

- the importance of visibility as a disabled WOC 

- the disparities between mental health care and physical health care in the medical industry 

- why she uses PillPack 

- a recognition of her privilege 

- why it’s OK to speak about your disability – and also NOT to speak about it 

- the importance of being intentional when creating spaces for open discussion 

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