Monday, June 5, 2017


taken from my facebook:

my journey with #Lupus (#SLE) has been magical and mystical all through the cycles of chronic pain and fatigue, going from immobile to semi-mobile to bionic woman thanks to my artificial hips (finding balance across the disability spectrum is not easy nor a straight path; disability is queer), and lessons (and still learning) for disability justice and liberation. as i hit close to a decade living with this degenerative autoimmune disease and in remission now, more functioning and having gained back a little power over my body, some of my earlier Lupus stories are hard to think of as truths... like damn, did i actually survive all of this? was my pain actually enough for me to handle so fiercely?

i hear it's #NationalDoctorsDay (even though y'all already get so much attention for becoming a doc in the first place) but petty aside, i have worked with dozens of doctors over the years trying to make sense of it all, many of whom have left lasting impressions on my life. while i'm critical of our shitty capitalist medical institution and the pharmaceutical industry and scared af to actually return to the US to manage my disease, i wanna thank some of the specialists i've had the pleasure to build with and see practice medicine with empathy.

thank you Dr. Laura Barinstein (rheumatologist; she diagnosed me with Lupus); Dr. Irina Kazachkova (endocrinologist; always up my ass to lose weight but supported me through Steroid-induced diabetes and high cholesterol); Dr. Ajoy Sinha (no doctor was prepared to perform a hip replacement surgery because i was too young; thanks to Dr. Sinha, i have a functioning left hip); Dr. Juan Kupferman (nephrologist); Dr. Alana Levine (adult rheumatologist); Dr. Kenton Fibel (orthopedic surgeon: knees and shoulders); Dr. James Chevalier (adult nephrologist); Dr. Edwin Su (orthopedic surgeon difficult to book an appointment with; my right hip needed immediate replacement surgery, i had no health insurance, and this guy cleared his schedule to perform the surgery within days). thanks for making it a tiny bit easier to navigate the mess chronically ill, disabled folks face with doctors, in hospitals, etc.

Lupus Foundation of Bangladesh Visit

#DisabilityJustice post: the universe continues to bring hope and strength in my life in the most unexpected ways. thanks to my Lupus article in The Daily Star, i connected with and met up with some of the board members of the Lupus Foundation of Bangladesh (LFB) on april 3rd, 2017.

LFB consists of doctors, patients, and allies that serve Lupus patients in Bangladesh with access to clinical support, counseling, funds for medicine and the many other costs of having a life-long illness, and are in the process of creating alternative job/career opportunities for patients (Lupus patients are predominantly women) who can't work full/part-time or at all thanks to capitalism, hostile workplace environments, and ableism which reinforce practices that make it difficult for Lupus patients to stay employed -- even if the workplace is supportive and have wellness measures in place, we are still unable to continue working because of the disease's unpredictable symptoms (we quit). there's a lot of guilt around not being able to work like able-bodied folks (we get tagged as unreliable or dishonest), even if we've got skills.

it's hard to imagine the perfect workplace when as a society we've not learned to be inclusive or practice inclusivity in ways that create alternatives for the bodies that can't keep up in the one we've modeled as standard. i'm learning too as i navigate spaces where naming what's going on in my body (as hard as it is), is important for my personal wellness and for allies to learn (as hard as it is) to support a disabled body. we will #survive! #lupus #lupusawareness #lupusfoundation

my lupus sister farhana (middle) & mithila (right)
with some of the members of the Lupus Foundation of Bangladesh

Spoonie/Differently Abled Allyship

By Shahana Hanif, thanks for contributing Emily Wynter

The purpose of this document is to name intentional ways for able-bodied friends to support friends with chronic illness(es) and (in)visible disabilities outside of just checking in about their day (the italicized is as important). Many of us struggle with naming what’s listed below; many of us (especially adults) struggle with access to support and care. The point of this list is to shift and transform the way we care and show up for our friends- so feel free to apply this guide in all your relationships. I envision creating a support network to help meet the needs of spoonies. *Please contribute to this list*:

  1. Accompany them to a doctor's appointment (sharing breakfast/lunch together before or after is a plus). Sit in when the doctor is meeting with your friend
  2. Help with grocery/medicine purchases + deliver to their homes. Support with funds if needed
  3. Read over / help write appeal letters when the medical institution is a pain in the ass about treatment, health insurance, and medicine costs 
  4. Visit them routinely (at their place of choice) 
  5. Offer to drive/pick up if you've got a car
  6. If they’re comfortable, rather than asking “how are you?,” ask them about their treatment process, check to know if they’re taking their meds, and how they’re doing emotionally/physically.
  7. Offer to be an emergency contact when the workplace/school/hospital/doctors are unable to reach your friend
  8. Share songs that lift their mood, videos of cute cat/kitty/puppy/seal/sloth/any cute animal they like, or if possible, recordings of you verbally sharing words of affirmation and healing with them, that you love them, that you fully accept them and think they are awesome/magical/any definition you are comfortable with.
  9. Read together. What worked when we were in grade school is still ok! Read a picture book of their choosing. Color in a coloring book. 
  10. Read up to date articles and new development around different ability advocacy. Find an organization that is helpful in educating you and advocating for your friend(s).

ramadan for the spoonie

for my friends practicing Ramadan & seeking a spiritual boost this month while surviving chronic illness, mental health issues, eating disorders, on medications requiring food/water, praying in different but legitimate ways because of physical disabilities, may the coming days be easy and kind on your body & faith.

you owe no one an explanation about the unconventional ways in which you are deepening your relationship with yourself, community, & God.

*if any of the above applies to you and you've not felt supported or don't know how to not feel isolated during Ramadan, i'm happy to share with you some of my practices.