Early into her journalism career, Syracuse native Natasha Alford was already showing promise — hustling hard to get hard news.
Around that same time, Natasha would receive unexpected news herself.
“I was diagnosed with Lupus three years ago” Natasha shared. “It’s an autoimmune illness, so it means your immune system is confused and attacking healthy tissues in your body.”
Her symptoms varied over the years.
She experienced extreme fatigue and body aches, but her busy lifestyle shifted her focus. Natasha would either ignore the symptoms or try to sleep them off.
“Eventually they became impossible to ignore,” Natasha said. “One day, I was running on a treadmill and could barely make it half-mile before I had to stop and go home because I was in so much pain.”
Another day, Natasha remembered waking up and not being able to bend her wrists because they were so swollen. That’s when she decided to go to her primary care doctor.
“The doctor initially thought my pain was arthritis but because I was so young, that didn’t make sense to me,” Natasha said.
She was then sent to a rheumatologist, a specialist who focuses on joints, muscles and bones.
After one examination, Natasha said the doctor suspected Lupus right away.
“Within just a few days of that visit, I experienced a flare of severe symptoms which sent me to the hospital,” Natasha said. “I couldn’t breathe or move without pain. Then they confirmed it was Lupus SLE (Systemic lupus erythematosus), the most common form of Lupus.”
Natasha says she is fortunate to have gotten the diagnosis right away because it can take years for some people to get a solid answer.
The impact on her active and demanding job would slowly become a reality.
“Lupus actually didn’t seem real to me for quite some time,” Natasha said. “After recovering from that initial flare, I felt fine and didn’t take it seriously. There was a part of me that was in denial about the illness, so I blew off taking medications, ate whatever I wanted and went full steam ahead with a busy schedule and inconsistent sleep.”
Natasha says it took a series of crashes and burns with Lupus flares for her to understand that she now had “a new normal and needed to respect it.”
“Sometimes we resist change because we don’t want to see ourselves differently,” Natasha shared. “But change can be good for you.”
The changes she made were simple but life-altering. She committed to consistently take the medications, which keep the illness under control.
She also focused on getting adequate sleep and eating a more balanced diet.
Natasha also began making time to workout and practice self-care, both physically and mentally. She says this was key in managing the very real and important responsibility of living with a chronic health issue.
There were some surprises along the way as she rebuilt her model of health.
“I was surprised to learn just how common Lupus is, especially amongst African-American and Latina women,” Natasha said. “I was also surprised to learn how much it disproportionately impacts women in their prime childbearing years. Basically, at the height of your life when you want to go full steam ahead, you now have to make careful decisions about how you spend your time, energy and focus to stay healthy.”
Natasha reflects on how she felt when she saw the stories of celebrities like Toni Braxton, Selena Gomez and Nick Cannon. Their stories encouraged her to look into just how big the Lupus support community is and knowing she is not alone.
As she continues her busy daily life as a journalist, she is able to share her experiences with others who may have just learned their diagnosis.
“Do not give up on your dreams and vision for a great life,” Natasha shared. “I was diagnosed very shortly after I’d moved to New York City to pursue a media career. It felt like the worst timing ever. But I didn’t quit on myself or my goals, and accomplished more than I ever had at any other point in my career.”
For women, Natasha has a push for self-kindness.
“Society already places an incredible burden on you to look and act a certain way,” Natasha said. “We often feel we aren’t ‘enough.’ Adding a chronic illness to those unfair expectations can mess with your self-esteem and make you feel defeated.”
Natasha wants her fellow women warriors to know that having Lupus makes you a champion by default, because you’re fighting and winning a daily battle that people can’t see.
“Give yourself as much love and grace as possible — you have permission to be ‘selfish’ when you need rest and self-care is mandatory, not optional,” Natasha shared. “Women must advocate for themselves when it comes to their health because we can easily be overlooked and go unheard if we don’t.”
Going forward, Natasha is focusing on what matters most in her daily life — using her voice to be sure she is heard.
“I am a young, single woman, often dealing with male doctors who are much older than me. It’s very easy to go into a room and be talked over if I don’t walk in with a plan of action,” Natasha said. “I’ve had to learn how to accurately report symptoms, ask questions, and hold medical professionals accountable for listening to me.”
Now, Natasha approaches doctors visits the same way she approaches reporting a story: “I research ahead of time, write down discussion topics, record notes and try to learn as much as possible so I can walk away with a tangible plan of action.”
Because your own body and health are on the line, Natasha wants people to speak up.
“The more we see ourselves as partners in the process of health versus sick patients at the mercy of the medical system, the more empowered we will be,” Natasha said.
In chronic illness journeys, the path is long and ever-changing and a solution or answer may not be what you ultimately get.
“There isn’t ‘get well soon’ because there will a long journey ahead for that person, with some highs and some lows,” Natasha said. “Lupus has taught me the value of life and taking nothing for granted. I am committed to maximizing each day and living more fully because health is true wealth.”
She also has advice for those struggling to be helpful to loved ones with a chronic illness.
“When you don’t know what to say, saying, ‘I’m wishing you good health,’ or asking, ‘Is there anything I can do for you this week?’ are great approaches,” Natasha said.
To learn more about Lupus or to donate to research efforts, click here.