Lupus Community

I just finished watching "Lupus Care," the most recent WebMD Community TV video about lupus from the caregiver's viewpoint. I watched as my mom cried. I listened as a wife shared what it is like from a spouse's perspective, and as a mother expressed fears about her daughter's future with lupus. It felt like a "lupus patient intervention." I felt like I got to see the other side of lupus. I saw what it was like to love and care for someone with lupus.

I know that sometimes we don't always want to face it, but if you have lupus, you're not the only person affected by it. Lupus can also affect everyone in your family and circle of friends. I also realize that I may sometimes take the ripple effect of lupus on others for granted.

My mother and father have helped me many times in my life, and though I always say "thank you" for the things they do for me, I never fully realized the worrying, stress, and fear my lupus diagnosis causes them. Being a part of this video truly showed me the other side of things.

I don't think there are ways to stop our loved ones from worrying -- it is a natural reaction for someone who loves and cares for you. But are there ways for that we can help lessen the worry for others? Yes!

? Be honest. I know that for most of us who have lupus, our instinct is to answer everyone who asks, "How are you feeling?" with the answer, "Fine". But being honest with our caregivers gives them a much better picture of how we truly are feeling. This helps them to not be so shocked if a bad lupus flare happens. It also lets them see and understand distinct differences between good and bad days.

? Keep people in your life "in the loop." Many times, people who have lupus have the instinct to shut the world out by not answering phone calls, emails, or even the front door. Most of the caregivers I spoke with want to help. They want to know what is going on with you. When you withdraw during times of difficulty, it can cause all kinds of "worst case scenario" fears for them. I always thought I was protecting them from hearing my negative lupus news, but what they are imagining and worrying about is by far worse than anything that is actually going on with me.

? Be grateful. So many people in the world do not have caregivers. We all need to remember that these people love us. Try to be patient with your mother, friend, spouse, or partner when they ask you for the hundredth time if you have taken your medicine. Try to be understanding when they ask you a billion questions so they can gain a better understanding of your lupus. Have patience. Say, "thank you." And be grateful.

Boy, did I learn a lot from that experience taping that video! It has certainly changed how I appreciate and interact with the caregivers in my life!

Did you see the "Lupus Care" video ? Did anything hit home for you?