When I was first diagnosed with Systemic Lupus discovered from red, itchy patches covering my body at the age of 15, all hell broke loose within my household. Muffled, unspeakable hell. At this point, only my mom and I knew. Early on, she had already decided it would stay that way. I wasn’t to speak a word of my illness to a single soul, not my friends, not my grandma, and absolutely not my father. “They wouldn’t understand,” she said. “They’ll talk,” she said. “They’ll accidentally tell someone.” I knew she was partially correct. I could just imagine my grandma, panic stricken, pulling out a Qu’ran and waving it over my head to pray for some kind of cure. Well-meaning, without a doubt, but possibly with a hint of their own secret motives and desires for my life. What if people found out? What will people say? How will I ever get married?
Lupus is well known as “The Disease With a Thousand Faces” because it mimics symptoms from hundreds of other diseases, making it almost impossible to easily identify until recently. Some of these symptoms are anemia, fatigue, hair loss, and possibly never being able to bear children. These are things that I know ran through my mom’s head initially, and would absolutely occur within my grandma’s as well if she had known at the time. This unspoken dynamic between us, where she had a hard time accepting my disease for me, and I had a hard time accepting it without her support was an awkward time where we avoided talking about my new-found lifetime companion in the form of an autoimmune disease, as often as possible.
In the beginning, she was in complete denial. It took my mom over 4 years to accept that Systemic Lupus, in fact, does not have a permanent cure. It’s a lifelong disease, that will always slowly and progressively attack your immune system, along with all of your organs. The most you can do is take preventative actions such as sleep well, eat healthy, and take medication to slow down the effects, not stop them. There are already so many “totkas”, or home-remedies, that are a part of our South Asian culture. Give a Pakistani mother an egg, yogurt, and turmeric and other seemingly random items from the pantry and she can whip up a solution for just about anything. A headache, back pain, and even a great(!) hair mask for shiny locks. That’s what the first couple of years with this disease were like for me. My mom slipping me a “healthy drink” here and there, buying my vitamins by the bulk and then guilt-tripping me by saying I was killing her when I didn’t want them. She spent hours on end researching cures to the best of her ability, always telling me something new. Of course, I appreciated and respected her attempts. After all, there’s no love like a mother’s love. Yet, I was still a bit bothered. Why couldn’t she just accept it for what it is?
People are not inherently judgmental and unreasonable.
Four years into it, it had become a part of me. I frequently experienced flare-ups, I often had trouble walking up stairs, and at this point I had forgotten what it felt like to live without constant back-pain (six years now – and this still holds true). I wanted so badly for my mom to stop speaking about my illness in hushed tones, and own it like I wanted to be able to own it. That’s where there was culture clash. Growing up immersed within the hybrid first generation Pakistani-American culture, full-fledged feminist with borderline diehard liberal views, I wanted not only to be proud of myself, and everything encompassed within me, but also bring attention and awareness to a disease that affects 5 million people worldwide, 90% whom are which women of color – yet it’s seldom talked about. However, her culture growing up in Pakistan had taught her differently. Even though she was very liberal and a feminist herself, her mind still went back to 20-something years ago, when everyone knew everyone’s business, and attacked one another for their shortcomings, and rationalized it as caring. It’s just like when random “aunties” will publicly shame you in group setting with comments like you’ve gotten fat, too skinny, have too much acne, or whatever else thought that pops up in their head, without taking your feelings into consideration. For some reason, empathy is something that is not well-perceived within the older South Asian community. She wanted to protect me from the cruel comments, the judgment, and spreading of false information. “Did you hear? So-and-so’s daughter got cancer from hanging out with a boy and is now going to die within three days!” Still, the thought of having to hide from the world hurt.
I can’t just blame everything on the older South Asian generation and call it a day, though. There’s even stigma within my own generation, amongst friends who were also brought up as first generation children of immigrants. The first reaction I generally receive is instant sympathy, and “I’m so sorry!” I think it’s almost human nature. People want to help, but instead just feel sorry for you. People want to understand, but when they can’t, they just feel bad for you. The stigma amongst diseases that can’t be physically seen or easily identifiable are even worse. Nobody can see what’s wrong with you, so when they find out, they either don’t take your complaints of back pain and killer migraines seriously because you’re seemingly normal looking, and I mean, as far as they know, you were fine yesterday, or they look way too into the disease and think you’re dying. Of course, that’s a possibility, just as it is with any other health problem, but there’s one simple solution to all of these unanswered questions, confusion, and misinformation. Communication.
If we could just start a dialogue, starting with individuals with diseases such as Lupus (who feel comfortable enough) amongst their core group of peers or friends, we could slowly begin to peel back the stigma that comes with diseases, especially undetectable ones. My mom isn’t the same as she was six years ago, and that change happened with the research and understanding of the disease. The answering of questions she was too afraid to ask initially. My grandma, who also knows now, is also very accepting and understanding now, regardless of the two generational cultural gap, after having answers to questions she had. People are not inherently judgmental and unreasonable. People are just afraid of the unknown. If only two things happened, if people with diseases were willing to educate others on them, and if people were willing to listen and start a dialogue, we could change what autoimmune diseases look like, starting right here in the U.S. People can finally start living their lives openly, free of judgment, and filled with people who not only care for them, but also understand them and their disease.