This candid, personal story was written by community member, Tanya W. She responded to one of our latest opportunities. Please thank her for her honesty and willingness to share in the comments below.
When I first had diagnosed with lupus, I had two sons (10 & 16 years old), and a daughter (13 years old). In the beginning, I had a difficult time being independent. I had to depend on my kids or husband to help me. That includes help in the shower or walking to the bathroom until I was medicated and taking treatments. Eventually, I learned to do things on my own.
My children were robbed of an active parent.
Due to medication, I was not able to drive. I couldn’t even walk or stand. I could not attend outings with the school or attend school functions. I couldn’t play basketball with my son or practice soccer with my daughter. I couldn’t help my eldest son learn to drive a car. We had to depend on other parents or friends or family to do what Momma was supposed to do for them.
I also put a lot of responsibility on my husband’s shoulders…
I had to retire at 31 and leave my dream job because I could not type or attend regular work hours. Plus, I was always exhausted and in a lot of pain. My husband went above and beyond doing things that a stepfather shouldn’t have to do. He did the best he knew at the time for the situation. He didn’t have to stay and care for all of us, but he did.
I would tell people who are newly diagnosed with lupus….
Let your body tell you how you feel. It is not all in your head. If you’re tired, rest. Push through the best you can and keep your mind positive. If your loved ones don’t understand, educate them. Don’t be afraid to ask questions and get support through online social media, counseling or support groups. You’re not alone in this and you don’t need to feel like you are.
Also, be open and honest with your doctors. Make sure they all are on the same page with your health. Do research on the disease so you know what you’re dealing with. Spread your story and get involved with research programs to help with finding a cure or even more treatments for this horrible disease.