Monday, February 17, 2014

IMHO...

It is so wonderful that we're allowed to have our own opinions and have the ability to share those opinions with the world. It is truly an amazing privilege that is very unique to our place in history.

For me, I have never been lacking of brilliant awesome many opinions and I have never been shy in sharing them. Of course, the world is not clamoring to hear my opinions as much as I would expect it to. At least, that was true until I had lupus. There's something about being a joyful person with a chronic illness. All of a sudden, your opinion starts to matter to some people. That's sort of what made me decide to start blogging. And I can't believe how many people have joined me on this journey!

There is a saying I heard a lot when I was growing up: "To whom much is given, much is required." There is responsibility that comes with what we have been given. And if you don't want to take responsibility, you are not exempt from the consequences. Words have power. They can encourage, they can hurt, they can make the ears dull. They can bring life or death. They can cause great change or cause something that needs to change to stay the same. So pick your words wisely. And if you don't, don't be surprised if you don't like the results.

So, let's take a moment to talk about social media. There's something about social media that has made us less skilled at the art of conversation. In a conversation, you don't just intermittently spout snippets of your opinion. You listen. Then you respond. You don't just respond to words. You respond to body language, voice inflection, and nuance. You respond to emotions like happiness and heartache. In a conversation, it is (hopefully) less about spouting your opinion and more about what matters most - people.

Social media allows us to make statements without context, without human interaction, without a conversation. The writer and the reader are blind to what the other is thinking or going through. We are often saying "mid-conversation" statements when no conversation had begun. We are given the illusion that we can say such "mid-conversation" statements and assume people are at the exact same place in our conversation. This is not how reality works. There is always context. And if we are not careful, our well-meaning proclamations of our opinions can be hurtful words in the context of someone else's life.

And that is the problem with our new found ability to declare to the world our opinions. We are too quick to stomp all over people in the name of "our opinion." You're going through something very difficult? Well I have an opinion based on a theory I have or something I read so I'm going to minimize what you're going through and treat you like you don't matter. And I am going to feel good about it because I'm exercising my right to free speech.

What have we become? Is this really the way we want to live?

To be honest, I'm writing this in response to a hurtful encounter I recently had in the social media world. Without going into any detail, someone was so focused on expressing their opinion about a matter that they flippantly said things that were extremely insensitive to something difficult my husband and I are going through. (Btw, if my husband says an issue is "hitting home because my wife has lupus," this is a hint that the topic is a painful one.) I do not believe that everyone needs to agree with my opinions. I do not believe that people should be restricted from having or sharing their opinions or beliefs. I also do not believe that our opinions are ever an excuse to treat people in a way that is uncivil, rude, or hurtful.

So, I propose we make a pact:
Let's remember that we can't see everyone's context.
Let's value people over our opinions.
Let's choose our words wisely.

Who's in?


Tuesday, February 4, 2014

Please don't be offended...

When you have lupus (or any chronic illness), it's easy to be misunderstood. This misunderstanding can often leave people feeling hurt or offended. So, on behalf of lupus patients everywhere, here is my plea: 

1) Please don't be offended if I back away when you try to hug me or shake my hand during flu season.

It's not that I think you're gross. Because lupus causes the immune system to be overactive, many lupus patients have to take immunosuppressives. This means that it's easy for them to catch illnesses--not just the flu, but anything that's contagious--and also that their ability to recover from illness is tremendously hampered. Something that could be a little, passing bug for you could be a long, painful struggle...or even a life-threatening complication for me.

2) Please don't be offended if I use hand sanitizer after shaking your hand or spray Lysol in your general direction.

Again, I don't think you're gross. But, my doctor told me to do it.

3) Please don't be offended if I say "no" to your invitations to hang out.

I love hanging out! I promise! I really do! But living with a chronic illness is a daily battle. Life - work, cleaning, driving - can be draining. At the end of many days, I am met with pain and fatigue. Sometimes, the thought of adding one more thing (even something fun) is overwhelming. In addition, overextending myself puts me at risk of a flare. And a flare means missing work, the inability to do simple things for myself, taking medicine that is hard on my body...

Whenever I consider hanging out with people, I have a lot I have to weigh:

- Do I feel well enough to hang out?
- Do I have enough strength for the activity I'm being invited to?
- When will I be able to replace the rest time I will miss?
- Is this night of hanging out worth the consequences I will face for the following week(s)?

4) Please don't be offended if I lack my typical level of animation when you're telling me something exciting.

I'm probably truly, genuinely excited, but lack the strength to show you at the moment. I probably want to jump up and down, clap my hands, squeal, and give you a big hug, but the only thing I have the strength for in the moment is to stare back at you with a barely-there, Mona Lisa smile. If you have a spunky personality and lupus, that probably means that you try to be spunky until the spunk runs out...at which point you become the opposite of spunky (A.K.A. sleepy).

5) Please don't be offended if I don't eat that special dish you cooked just for me.

I bet it tastes amazing. I also bet it contains some ingredient that is really good for everyone else but would kill me. Alfalfa. Garlic. Edamame. Aren't these suppose to be really good for you? Yup! But alfalfa sprouts are the don't-ever-under-any-circumstance-consume-this-if-you-have-lupus food, garlic boosts my immune system and causes me to have arthritis and fatigue, and soy products increase lupus symptoms. So, yeah...

6) Please don't be offended if I forget your name or something you just told me (and repeated for me 20 times).

I have an amazing memory. I memorized about 100 pages for my graduate piano recital. I can recount every detail from a conversation that happened five years ago. But if I'm tired, I get lupus fog and all short-term memory and sentence forming skills go out the window. Just ask my husband.

On a very different note...

7) Please don't be offended if you pray for me to be healed and I still have lupus the next day.

Thank you so much for praying for me! I believe God is my Healer. But I also believe that God works in His perfect timing and that He is using my life to communicate hope to people who have none. And, don't think God isn't answering your prayers! Every time I have a doctor's appointment and they see progress they didn't think was possible, that is a miracle.