Alisa Stevens: Lupus Warrior

 In Links to Lupus News, Story Sharing Project

Mrs. Illinois American 2021, Alisa Stevens. Wife, mother of two, and lupus warrior

Alisa Stevens
Antioch, IL

What type of lupus do you have?

When were you diagnosed with lupus?
December 2004

How long did it take for a correct diagnosis?
I was extremely lucky. I had a great Primary Care doctor that recognized my symptoms, and it only took 2 months.

Were you misdiagnosed first?
My first doctor did think it was just viral and would resolve on its own.

How has your life changed since your diagnosis?
I had to realize that I am not Wonder Woman and learn to pace myself and not try to take on too much. I have days, sometimes even weeks where my energy level is at 100% but there are days where I struggle to get out of bed. It can be depressing and challenging but it has taught me to cherish the days when I feel my best.

How has your diagnosis affected your family and friends?
My family and friends have been the best. I remember feeling very guilty when my kids were young because there were days that I didn’t have the energy to play with them. They would crawl into bed and watch TV with me. My husband is the best!! We had only been married for 6 months when I was diagnosed. I remember walking out the doctor’s office and telling him “You didn’t sign up for this”. He response was, “Yes I did, and we will get through this.” 17 years later, he is still my biggest supporter. He runs the Chicago Marathon every year and raises money for the Lupus Society of Illinois.

Has a lack of public awareness about lupus affected your quality of life?
Yes!!! People look at me and when I tell them that I have Lupus, the first thing said is “you don’t look sick.” That is not a complement!! I also hated to make plans with friends because I may feel ok days leading up to the event and feel sick the day of. I would push myself to go even when I was feeling sick because I didn’t want to disappoint anyone. I would end up feeling terrible for days. I had to learn the hard way but saying no is ok!!

Is your employer supportive of your diagnosis?
I work for a pharmaceutical company and my manager has been very supportive. I am working full time and I very fortunate to work with people that understand Lupus.

How did you find the Lupus Society of Illinois (LSI)?
I did a search online and I came across LSI.

How has the LSI helped you cope with lupus?
It has kept me up to date with the latest treatments and reading stories of others living with Lupus.

What would you want the world to know about lupus?
I would want the world to know that having Lupus isn’t a death sentence. There are many who are living their best lives with this disease. Lupus had made me appreciate life in so many ways. Every day is a gift and I plan to continue to use my voice to make people aware and I hope to bring more education and resources to those living with Lupus.

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