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Living with Lupus

Margie Cossman, 40, has lived in New York City for 18 years and has had lupus for most of her life. In this interview, Margie opens up about how lupus has affected her—giving her immense appreciation for the people around her and forcing her to focus on what’s important in life.

Tell us about your lupus.
I’ve had lupus for over 20 years. I had my first flare as a child with the typical symptoms: fatigue, low grade fever and a rash. At the time, lupus was not as widely known as it is today. I was misdiagnosed several times with everything from “mono” to strep throat. My pediatrician finally uncovered the lupus and started me on steroids right away. Most of my battles have been skin related although I did end up with glaucoma—a side-effect of the high dose of steroids.

How do you manage life with a chronic illness?
I’ve been fortunate in that I’ve never had to be hospitalized for any lupus flare. However, that doesn’t stop me from thinking about lupus for every big decision I make in my life. I came to New York City for college and was incredibly excited about the new challenges I’d face in my academic and social life. I ended up overextending myself and causing a serious lupus flare. I spent the last two years in college playing a game of checks and balances, trying to get the most out of my college experience while taking care not to activate the lupus again. I probably learned earlier than most that life is about balance and that everyone’s limits are different. While my friends could keep up with school and stay out all night, I had to make choices, prioritize my time and make sure I got enough sleep.

What are some of the challenges you’ve faced with lupus?
Seeing a rash develop and get worse—and knowing that it can be seen by others as well—can be devastating to a child or young adult. I had to learn to ignore the strange looks and insensitive comments. It wasn’t easy, but it made me stronger and more aware of others who face hardships in their own lives.

Who helps you get through the tough times?
My parents have been so supportive ever since I got lupus. My mother was with me almost constantly during the initial months after I was diagnosed. My father made sure I could see the best doctors and my mother was with me at every appointment. Both my parents always stayed positive, never letting on how worried they really were.

My younger sister Alison has done everything from making get well cards as a child to offering to make me a wig with her hair as an adult. My sister Winnie is a health writer and is always offering suggestions on better diets and fitness programs for lupus patients. And my brother Randy is just always there for me, providing laughs and keeping me distracted during the stressful times.

Having lupus helped me realize what a true friend really was. Just keeping in touch and staying with me, even when I may not be so much fun, makes a huge impact and I’ll always be grateful to those who’ve stuck by me.

Has lupus presented obstacles at work?
My first job out of college was very demanding, and I quickly learned that in that position I couldn’t balance my career, social life and need for rest. I left the job after two years and luckily got a job that was challenging but with a much steadier schedule. While I don’t advertise the fact that I have lupus, I do think it’s important to let my managers know that I have the disease and I may need time off for doctor’s appointments or just to catch up on rest. I’ve never felt discriminated against for having the disease.

What role does lupus play in your life, outside of work?
I try to keep up with everything and everyone, but know in the back of my mind that I have to “ration” my time. I’ve been blessed with great friends and family who understand that occasionally I have to say ‘no’ to invites because I’ve used up my allotted “play time.” I’ve often felt guilty about this, but over time I’ve learned that there are other ways to show you care. I do my best to make the most of my time and focus on quality over quantity.

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