One Patient's Positive Perspectives

Can one person do enough to matter?

DailyFact (2)What can one person do to make a difference?  It might seem like your own efforts are just a drop in the bucket… no, an ocean… when it comes to helping spread information about lupus.  Yet, it is important for everyone we know to have a basic understanding of its signs and symptoms, as well as knowing how lupus affects the lives of those who have it.

Just like for any other potentially debilitating or fatal disease, people need enough lupus awareness so they can recognize possible symptoms and get help, for themselves or someone they care about.  So, you can make a difference!

We all can make a difference!

It always seems to amaze me how much people appreciate it when I talk to them about Lupus.  Really!  Sometimes in the elevator, sometimes in a meeting, sometimes out and about, running errands or in any other mundane situation.  Sometimes when it is the last thing to expect, another short conversation about Lupus pops up.  There are many people in each of our own little corners of the world, and those of us who know about Lupus can help others understand it better.

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Each person we meet matters!

Why do we need to bother?  People just don’t know much about Lupus, and because they don’t, they don’t recognize the signs and symptoms of lupus in themselves or people they know and love.  Earlier diagnosis and treatment has been proven to reduce the severity of lupus and to reduce mortality rates.

Each person that crosses our path matters, and what we can say to them about lupus just might make a huge difference in their life or in the life of someone they know.  Getting a diagnosis and treatment can be a game changer.

Yes, in my pocket there is always an “elevator speech” about lupus ready, actually several, depending on who the listener is.  There is one for co-workers, one for strangers, one for professional networking people, one for people in my  family and even one just for people at church.  Not everyone has the same interest in the same information, or even wants to know “that much” about me.

Beware the “TMI” Moment!

There is one caution!  When speaking to people about Lupus, its good to be on guard for the “TMI” moment, when going beyond it will cross over to an unbalanced focus on lupus or share information beyond the interest, intimacy or scope of my relationship or role with that person.  It’s best not to go beyond anyone’s actual level of interest, or cross over into areas inappropriate to our professional roles or social relationship.  How will you know? Watch their reaction, and be kind and let them go when they have reached their saturation point!

Interaction

Spreading Lupus Awareness

The goal?  To leave a positive note, a message of faith and hope, or even an exhortation to people to be proactive about their own health, or encourage it in the lives of people they love.

When appropriate, I take the opportunity to share how personal faith in God has helped me rise above potentially negative outcomes, self-defeating behaviors and the ever-present temptation for lupus patients – just like anyone else with a chronic illness – to assume a victim mindset.

Their stories and questions

So many times during casual conversations about Lupus, people tell their story about a mother, sister, aunt, cousin, or even spouse or child with lupus.  Sometimes, they even realize that someone they care about has symptoms that could be lupus or some other autoimmune condition.  These folks always seem encouraged to hear my story, and often share something special about the person with lupus in their lives, or compare my lupus experience with theirs.

And then, there are the very pointed questions, perhaps about something they have wondered about lupus for a long time, or don’t quite understand about lupus.  People seem more comfortable asking a stranger about something that might seem probing or rude to ask some they know.

She needed me.

Correcting Misconceptions about Lupus

Rare Opportunities

Once in a great while, an opportunity arises to tactfully correct a person’s misconception or unkind judgment of someone they know with lupus.  Recently, a woman shared her intensely negative feelings about a member of her family who has lupus, but was honest enough to say that our conversation completely changed her perspective, made her a little bit ashamed, and gave her a whole new compassion and desire to help change her extended family’s perception.

That was a powerful, yet humbling moment.  That single instance of increasing lupus awareness had potential to change the family dynamics a lupus patient I’ve never even met.  We can be grateful when we have a rare opportunity like this to make a real difference.

Many times, people just have no clue what Lupus is, it is always a privilege to be a source of accurate, positive information.  Spreading a little awareness may be easier than you think, so give it a try and enjoy the reward of helping people understand something everyone should know about Lupus.

 

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