Lupus Advocacy – My Daughters’ Views

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With over 1.5 million people living with a diagnosis of lupus, you would think that the symbol, the purple ribbon, would be just as mainstream as the pink ribbon is for breast cancer.  Imagine how many people are out there who do not have a diagnosis of lupus yet, but show signs and symptoms?  Funding for research, raising awareness, and helping to improve the lives of those suffering with lupus would be wonderful however, lupus is an autoimmune disease that has been put on the back burner for far too long.

I could tell you stories about how I was diagnosed with lupus in 1999 at the age of 17 and watched my hopes and dreams for my future crumble before my eyes.  My parents, brother, and sister watched me change into this new person that they did not recognize.  I could tell you how my family stood by me and still do to this very day as diagnoses continue to add to my medical file since my diagnosis of lupus.  It must be hard for them to see me suffer in pain and and watch me in frustration as I speak; sometimes losing my ability to think clearly due to brain fog.

Why waste any of my time on explaining how lupus has affected my life?  I have others who are able to explain their views on my health and living with me.  I have been blessed with 2 children (my biggest dream in life) and a wonderful husband.    My husband stands by me through thick and thin, although it is a very frustrating situation for him to see me each day at a different pain level.  We cannot ever commit to invitations at friends and family’s homes, as we never know how I will feel from one day to the next.

My daughters are well aware of what lupus is and when they ask me questions regarding lupus, I am as honest as I can be when explaining how it feels to have lupus and how mommy cannot always do everything that I want to with them.  My daughters are absolutely amazing in understanding when I don’t feel well that I need to rest so that I am able to “recharge my batteries” for more fun times later.

Lupus affects more than just the patient.  Lupus affects families.  Patients are sometimes thought of as chronic complainers. A lupus patient speaking out about how the disease affects their lives is like listening to a broken record.  We are just a voice that begins to sound like the teacher in Charlie Brown…. “wah whah whah”. We may seem as if we are exaggerating about our symptoms and looking for attention.  What we are actually doing when talking about how we are feeling is giving our loved ones a heads up that we need to slow down or we may be out of commission for who knows how long.

Instead of hearing a patient’s point of view, maybe a child’s point of view will break the barrier and help shake Congress to understand that action must be taken immediately! Please take the time to listen to the video in which my daughters explain their views on lupus, their feelings and hopes for the future in regards to me as their mother and the rest of the population living with lupus.

*Please refer to my blog post  Explaining Lupus To My Daughters for more information on being a mother and explaining what lupus is*

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