If you are reading this blog, then  either you love someone with an "invisible" disease, or you are suffering from one. Today is the third day of my infusion and the common question that I get asked almost hourly is: "How do you feel"? I am grateful that people are concerned about me and care enough to ask me how I feel.  What I hate is when you tell your loved ones that you're either in pain, exhausted, or that you do not feel good and then you are dismissed.
What do I mean by being dismissed, well it almost feels that they ask this question out of being polite hoping that this is the moment that you'll you are fine, or that you're ready to go to Six Flag's, or run a marathon with them.   The look in their eye's let's you know that they hate hearing that your sick. However, the flip side of the coin is being dismissed after the question is asked. You know what I mean "Hey Suzy, how are you doing? Are you feeling better?". You answer with "No, I am wiped out", and the loved one continues on with their agenda, dismissing what you just said.
In order for me to have a normal and somewhat happy life, I have to believe that we are often dismissed not because people don't care, its that they do care, and do not know what to say. Or, they've heard "I feel like crap", so many times that they don't know what to say or how to fix our pain.  LUPUS and ALL invisible diseases wreak havoc not only on the person with the disease, but those around us. Lupus is a TEAM experience!
Let's face it, how many of us have lost contact with friends? I am sure they got sick of us having to cancel our lunch dates. I don't want to be a "Debbie downer", but you can't lose a real friend. Relationships that truly matter will find a way to make things work. With that being said, it is OUR responsibility to communicate in an effective way and to talk about our feelings and what we're going through on a more personal level.
Often times friends will only understand what we're going through when we explain Lupus to them, share how we're feeling by being honest and open. I no longer will lie, or cover up how I am feeling. I need to take care of myself and do what is important for my health. And I am a firm believer that when someone shows you who they really are, we should believe them. Lunch dates can be done at home with some extra effort from our friends. We can communicate better with our loved ones, and we can let go of any expectations, and love ourselves more by taking the time to care for ourselves! God bless!

Why have a blog? To help anyone who wants to understand this life sucking disease of Lupus. Maybe to pay it forward, help others and mostly to be able to come to a place to vent. After all, even those around us do not truly understand the disease. They try to help and they try to be understanding, but when we don't always "look" sick, it's so hard for our loved ones to forget about this "invisible" illness. Mostly because they love us and they fear us dying. This blog is for anyone who cares for, or is going through Lupus. Dare to care about an invisible disease!

MIRANDA ROSE XO