Erika R. – Diagnosed at age 34
Eleven years ago, now and shortly after I had my third child, I noticed I was extremely tired. It was not the kind of tired after a long day at work, but rather the kind of tired you feel in your bones and weighs you down like you have the flu, where you have no choice but to lay down. I wondered if it was normal. Is this what all moms feel? My hair was falling out in clumps. I was overweight, a mom to 3 young children and in school full-time studying for a bachelor's degree. My joints hurt bad, and I got sick a lot. I would get low-grade fevers and canker sores often, but my kids were in preschool and often got sick too, so I didn't think much of it. My doctor said I needed to lose weight and eat better. He told me I had postpartum hair loss and needed to take better care of myself. I thought my rash that would come and go was probably just a reaction to soap because I had sensitive skin.
So, I started to take better care of myself: I saw an endocrinologist and lost 100lbs, but I still felt sick. My joints still hurt, even more so. I only got worse, started becoming faint when I would stand up. I cried every day. I thought I was dying, and nobody knew what was wrong with me. My doctor said it was all in my mind and suggested I see a psychiatrist. I finally found my rheumatologist after 7 years of symptoms and she was determined to find out what was wrong with me. I was relieved to get a diagnosis of lupus because we could create a plan of attack.
Five years later, I finished a master's degree, returned to work and enrolled in a doctorate program. I have found a workplace that is very flexible and enjoy advocating, educating about lupus and lobbying. My most important piece of advice is to allow yourself grace. Use resources like LFA to find other lupus warriors to connect with and know that things will get better, but sometimes they will slip back too and that's ok.