If you are living with lupus, or know someone who is, you will undoubtedly come across references to it live or via internet. Over the last three years of MLWT, I have watched the presence of lupus grow to new heights and am grateful to the powerful impact the internet has given to so many voices. Lupus is often considered an “invisible illness” due to its inconsistent symptoms, lack of clear diagnostic protocol and the diversity among those it touches. Lupus and its primary symptoms of fatigue and roller coaster health affects leave much to be desired in a marketing perspective, but the explosion of patients through blogs, health networks, Facebook and Twitter make it clear that Lupus is no longer the invisible threat it once was.
Although I received a number of ‘hits’ on my post regarding Oregonians and their invisibility pertaining to lupus , you’ll notice the silence in the comments…again. As the world opens up today on what living with lupus looks like, feels like, and how it challenges us, I was hoping to see more people from my own state join in. Perhaps you are. A recent comment from a person via Twitter, however, made me realize that there is a population of lupus patients that we won’t hear from (maybe all here in Oregon?). Does that make their experience less important in learning about lupus, simply because they aren’t broadcasting them? I don’t believe so.
The comment I’m referring to was in response to my ‘tweet’ “So, what are you planning for Lupus Awareness Month?” I received an answer that hit the nail on the head and I think it represents a number of people living with lupus (or other illnesses) that are chronic and less visible to others. The person said that she was hoping to be able to forget about it as much as possible. Although she recognized that to others it may “sound awful…,” I think her comment is a solid and valid point.
According to Dictionary.com , the definition for awareness identifies it as an adjective rather than a verb. Yet, health advocacy has forced this measly description into action and its momentum grows every year. Supposedly based on a variant of the Old English gewaer, meaning ‘watchful’, the modern definition has been translated to meaning conscious or aware of danger; alert; to be fearful, wary, or cautious.
Anyone else feeling a little uneasy about this?
The comment my Twitter friend made, I think, reflects a key point in living with lupus: we seem to be in a constant state of defense. Physically, medically, emotionally, socially, mentally, etc. It is no coincidence that facing health challenges often are referred to in somewhat military terms, as if we need to rally the troops in order to get by. In our case, though, our troops are already out of control. Does participating in awareness campaigns signal our minds and bodies to fight even more diligently, when what many of us really want is a break from the chaos? It sounded like my Twitter friend does and, in my opinion, we are all due for a well-deserved one.
I’m going to counter the movement today, not out of rebellion, but out of respect to those who are probably reading this anyway…others living with lupus. As the world hears from many out there up for the battle to be heard, I send a wish, rather than a battle cry, for ease and peace today to those of us who are simply wore out. Today, put aside the banners and colors, and wear the color that makes you happy. Seek inward to learn something new about yourself, rather than focus on the persistent pain and fatigue of lupus that fill the stories being shared. Be aware that, although lupus is a part of who you are in many ways, there is no need to be fearful, because there is a lot more to who you are than your illness. By finding ways to liberate the other parts of you, you will teach others what lupus means to you.
No apologies are necessary if participating in World Lupus Day or Lupus Awareness Month doesn’t motivate the warrior in you~ you’re already at war and I know that. Be good to yourself and put down the sword~ spend today in peace.