Meet Lavita Williams, Lupus Warrior and LSI’s Newest Support Group Leader

 In Links to Lupus News, Story Sharing Project

By: Lavita Williams

What type of lupus do you have?
SLE

When were you diagnosed with lupus?
2009

How long did it take for a correct diagnosis?
13yrs

Were you misdiagnosed first?
Yes, for several years.

How has your life changed since your diagnosis?
My life took a huge dive in a negative way. I lost my job, and friends. I couldn’t work at my church and volunteer like I used to. I had little to no energy. My income changed drastically.

How has your diagnosis affected your family and friends?
Being diagnosed with lupus does have a big change on your family, And your friends. I lost most of my friends because I wasn’t able to do the things that I used to do with them (simply walking in the mall shopping, going out to parties or even lunches & dinner). Friends do not understand that you do not have the energy and that you’re always sick. You can look good in the morning and by the time an event comes in the evening, you have no energy, and you are sick. Sometimes even with a fever. I am married and sometimes even with my husband, he does not understand. He sees me as I’m lazy, or I don’t want to do something. I don’t have the energy when he’s used to me doing everything. My children don’t understand but they try. Kids want their mom to be the mom. And not be sick. It does affect my family and friends tremendously.

Has a lack of public awareness about lupus affected your quality of life?
Unless you are in the lupus community there is not a lot out there about this disease. You must do your own research; some primary care doctors don’t even know much about it. Be your own advocate!

Is your employer supportive of your diagnosis?
Currently unemployed, I am on disability. But I plan on going back to work. I have kind of gotten this lupus thing not under control, but where I can manage it better. I know my body better now. I am in school right now. Obtaining a master’s degree in healthcare administration. I would like to do something within the lupus community with this degree.

How did you find the Lupus Society of Illinois (LSI)?
I went to an LSI support group at Rush Hospital. I was invited by LaShon Gurrola to a lupus Christmas party about 6yrs ago.

How has the LSI helped you cope with lupus?
The educational part of The LSI Support group helped me so much in learning about lupus. It also helped me to be able to vent in a safe space, about things that I’m going through. It helped me to learn how to be an advocate for myself.

What would you want the world to know about lupus? Why?
I would like the world to know that people with lupus are not lazy. I would like the world to know that people with lupus didn’t choose to be this way. That this is a disease with no cure. We have lupus and we fight every day, just to function on a daily basis.

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