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.