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I Was Diagnosed With Lupus At Age 30

Her Voice

When you post a picture to Instagram, there's so much people don't see. And for the past three years, I've gotten good at sharing my life's highlights:


Toasting cocktails with Oprah Winfrey, interviewing Denzel Washington on the red carpet, traveling to Jamaica to dance around in a bejeweled Carnival costume and hitting the campaign trail to interview trailblazers. My career as a journalist and host has been a dream realized and many weeks have felt like drinking out of a fire hose of opportunities with endless stories to tell. I simply love what I do.

But while I was busy telling other people's stories, I was quietly hiding the most challenging parts of my own — tucking them away from the very spotlight I so enjoyed being in.

Filtered out of Instagram's 4x4 digital frame were: doctor visits in small sterile rooms, IVs poked into the softest creases of my skin, MRI scan machines like giant coffins swallowing my body whole, white cylinder pills I could never remember to take before breakfast, and countless days where getting out of bed — once an automated routine — felt like mission impossible.

When I was diagnosed with lupus, I had just turned 30.

I'd spent a brutally cold winter hustling and grinding in my first media job in New York City. But life had turned to an upswing. I was settling into my closet-sized apartment in Harlem; I'd proudly closed the chapter on a bad relationship; and I had my first big press junket where I'd be the on-camera interviewer.

This was my season to come up.

Then, one day I couldn't bend my wrists.

I recall waking up in my bedroom, looking down and wondering why they were so sore.

The pain was excruciating and it felt like cement had been injected into my joints. My body felt like someone slashed a balloon, letting all the energy inside of me deflate. So I slapped on an IcyHot patch and powered through the day, going into the office for business as usual to film a news video. After about a week of discomfort, finally the pain screamed loudly enough that I made moves and went to the doctor.

Days later, when I'd forgotten all about the visit, my cell rang while I was at work talking with my boss. By the time I finished with him I missed the call, so I stepped out of our tiny shared office space to call back. "Ms. Alford, you tested positive for ANA, which is linked to arthritis. I'd like you to come in for further testing," the doctor told me.

Strange. Arthritis at 30 years old? Surely this was a mistake.

More appointments were made. I went along, still convinced nothing could seriously be wrong.

About two weeks later, I met with a rheumatologist (a doctor who specializes in joints and bones) letting him poke, prod and examine my body, before he casually declared, "I think you have lupus."

The weight of his words hung in the air.

Lupus? What was that? The first thing that came to my mind was Toni Braxton, the legendary singer who I'd heard periodically struggled with the illness.

The doctor explained it was an autoimmune illness, in which your immune system attacks healthy cells and organs. Some cases were mild and others were severe. Testing and observation would reveal where I stood in the years to come. "Aren't I too young for something like that?" I told him half laughing, half hoping he would reconsider his diagnosis.

"You're never too young for anything," he responded, flatly.

I left the office that day confused and shocked, told to come back soon for follow up tests.

At 30, I was in the prime of my life. I wanted the life I had imagined. I didn't want a new normal. I didn't want to have lupus.

"I wanted the life I had imagined. I didn't want a new normal. I didn't want to have lupus."

After mulling it over a bit, I vowed to carry on and not overthink it. I had a salsa dancing date planned that weekend, and I could deal with this lupus thing later.

After about four hours of Puerto Rican rhythms and spinning turns on an old vinyl dance floor in East Harlem, I jumped up with shooting pain in my chest — it felt like glass shards were being dragged across my lungs each time I took a breath — sharp, deep and painful.

"I'm really sorry to do this, but I think I have to go to the hospital," I told my date, completely embarrassed.

"It's okay, let's go," he said.

We waited for hours in the Emergency Room as doctors ran my vital signs, injected me with pain medication and confirmed that these were signs of a flare — a scenario when lupus is highly active in the body, my immune system attacking my healthy tissues, a small pocket of fluid developing in my lungs.

I would be released from the ER late that next morning, but rather than rest, I ran to research questions to ask celebrities at my upcoming press junket.

When I showed up to shoot my interview, no one knew I'd just been in the hospital 24 hours beforehand.

I posted a photo on Instagram smiling with actress Tichina Arnold — who ironically (or maybe divinely) was a lupus advocate. But as much as I wanted to, I wouldn't dare say a word to her either.

And in that moment being ill in plain sight became my superpower.

Over the next few months rather than dig further into my new diagnosis, I doubled down on denial, blowing off taking my daily medication — two Plaquenil pills that kept the disorder at bay — diving deeper into my work to prove that nothing would stop me from my media career — and of course that lupus wasn't a real thing, for me at least.

The approach worked — mostly.

For the first year of my diagnosis, there'd be stretches of time — sometimes months — without major issues. So I'd stop taking my medication altogether. Then I'd get a cold that would last for weeks and morph into pneumonia.

Working for a small digital news company, there wasn't always someone to pass along my responsibilities to, so I'd work when I didn't feel well, calculating that I simply couldn't afford to take a day off. That only compounded the struggle.

I fell victim to the dangerously unhealthy mentality that is often ingrained into young women of color: you must work twice as hard. There's no space for weakness. Do the work or get replaced with someone who will.

Being young and "sick" felt like a Scarlet letter, an asterisk on a life that had so much more to it than this one chapter. What if the dreams I'd worked so hard for, went right out the window?

As the months, then years, marched on in my journey, I was discovering something — I was still advancing professionally. Getting new and better opportunities. Garnering some praise for my work.

I thought I could run from lupus, not knowing it could catch up to me.

The realest wake up call would come early in 2018, when I flew to Los Angeles. I traveled on barely any sleep after working through the weekend, posting a picture on Instagram announcing my arrival. Shortly after I would check into the ER with a fever and lupus flare, this time thousands of miles from home.

As I sat in the hospital bed a few hours after being checked in, I got a phone call — it was the president of the National Association of Black Journalists (NABJ).

She was calling to tell me I'd won Emerging Journalist of the Year, a signature award given to young black journalists to recognize their potential. I would be recognized that summer at the national convention in front of my family and peers.

The irony of getting this award, was that it had been renamed in honor of another young journalist — a rising star and beloved community member— who right before starting his dream job, died from health complications at the age of 32.

I was turning 32 in two months.

In that moment, I had an epiphany:

I didn't ask for this condition and it wasn't my fault, but prioritizing my health was no longer optional.

If I wanted to enjoy the success I'd work for, I had to change my life.

Lupus could be managed.

And the only person stopping that process was me.

Today, I have nothing left to hide.

Over the past year, I've started to make changes that reflect a new normal:

I more consistently take my medication. A friend offered to text me every morning to ensure I took it, until it became a habit.

My denial about needing it has given way to understanding that I pay a hefty price (both physically and financially) when I don't take it.

I no longer say "yes" to every single thing I'm invited to. There was a time I felt obligated to show up to every press junket, interview or opportunity to provide coverage for things that I wasn't even that interested in.

These days I'm more discerning. Anything I choose to travel to or make time for takes valuable energy. I try to make my schedule reflect my actual values and journalistic priorities.

I've learned how to be an advocate for myself with doctors, treating my condition with the same focus, research and attention I put into reporting a story.

This fall, I moved to Washington, D.C. to cover midterm elections for theGrio.com. What most people didn't know was that I also moved there to be evaluated at one of the best hospitals in the country for rheumatology (the speciality which deals with lupus).

I didn't feel I was really being listened to by previous medical teams or handled with care (something black women often face in the healthcare system), so like a coach I changed my starting lineup. For the first time I really did my research, even visiting the Lupus Foundation of America to get books, articles and contacts in the field of lupus advocacy and treatment.

Now that I'm back in NYC, I feel more equipped as an active participant in my medical care and have found a local team of doctors I trust.

I am now prioritizing physical fitness and activity. During my evaluation period in D.C. I learned that I'd developed some joint damage, likely as a result of steroids used to treat lupus over the years. I'm undergoing physical therapy and getting treatment. I am required to use crutches for the time being to prevent further damage, something I've never addressed publicly until now.

It's been an adjustment to say the least. I cried when I found out about all the lifestyle changes I would have to make to accommodate healing and recovery. But as the great James Baldwin once wrote:

"Not everything that is faced can be changed, but nothing can be changed until it is faced."

Or as my Daddy says, "You gotta be real with yourself."

I am being real about what I need to do to get better, so I can actually get better. That's called self-care.

To that end, I've continued working through the psychological and emotional impact of chronic illness.

I've always had a therapist to talk with ever since I was diagnosed, and that's given me space to vent or have support when I didn't feel understood anywhere else. I've also found the company of others who are in the same fight.

Last month, I put on a pink ball gown and attended my first public event for lupus, the "Evening of Hope" Gala in New York City.

It's something I would've never done before — acknowledging that I was one of the 1.5 million affected — but a new friend and lupus advocate invited me to join.

"We are often never as alone as we feel."

I wasn't 100% sure I'd tell the world my story — I had every right to keep it private — but I asked a gifted photographer to document the evening for me, in the event that I would be.

The author at Lupus Foundation of America's "Evening of Hope" Gala 2018 (Photo: Noémie Tshinanga)

Listening to people's testimonies of triumph that night at the gala, showed me that I was never alone in this fight to begin with. We are often never as alone as we feel. And in life, no matter what we are handed, there is purpose to be found.

Still, when an official event photographer approached me to pose for a photo, at first I hesitated.

What if the picture ended up online somewhere, and I couldn't change my mind about people knowing I was in the room?

Then, I shook it off.

I was — and am ready — to show picture of life that is full, complicated, challenging and real — one that is bigger than any career, Instagram photo or autoimmune condition.

It is a picture that leaves out no part of me.

Natasha S. Alford is Deputy Editor of theGrio, where she covers social issues, politics, and culture. As an on-camera host, she's contributed to Power 105.1's The Breakfast Club and Cheddar TV, and her writing about Afro-LatinX identity has appeared in The New York Times and OprahMag.com. Follow her latest stories, travels, wellness tips and interviews on Instagram at @NatashaSAlford and #ThePeoplesJournalist.

*Originally published on Medium

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
Sign up

Featured image by Shutterstock

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