5 Ways You Can Help My Husband Get Me Through a Lupus Episode

I asked my husband, David, which characteristic of my lupus that others don’t understand bugs him most. Without hesitation, he answered, “Other people’s reactions when we are out in public and you have an episode. They panic and get in my way. They need to understand that I got this.”

I love going out with my husband, whether it’s just the two of us or we’re with family and friends. Because going out can go horribly wrong, or just a little wrong, even with the best-laid plans, we have self-imposed guidelines.

First, with the exceptions of major holidays, trips and other special events, we try to keep things spur-of-the-moment. That way, we can take advantage of good days and settle into the couch with a movie on bad days.

Second, we try to keep things close to home. If things go awry, it helps to be only a 10-minute drive away. If we have to be far away, especially when visiting family out-of-state, we look up the nearest emergency room or urgent care clinic and keep a list of diagnoses and medications handy too. Short and long trips always include a discussion on what meds or other pain-relieving items need to be brought along.

Third, if it’s a longer outing, we consider when, where and how a nap can be included. Naps are helpful for me.

Fourth, because I am gluten-sensitive, we discuss my food options before we even leave the house, especially if I will need to take any of my medications that require food.

Still, things happen. Pain, fatigue, nausea, migraines, etc. can come on quickly or slowly. How can those around us help him help me?

1. Remain calm. Panic or undue alarm creates unwanted attention from other customers of the restaurant, shoppers in the mall or people wherever we are. That attention increases my own anxiety. Plus, if David has to calm you down, he can’t focus on my needs.

2. Follow his lead. Whatever he needs, he will ask. Sit tight, listen and watch. He will evaluate me quickly. He might request a glass of water, my purse for a medication, someone to pull up the car or walk me out while he gets the car or even an ambulance. Wait to hear his request.

3. Trust him. Don’t up-play or downplay what is happening. He knows me better than anyone except myself; although, there have been times he has handed me a pain pill and whispered in my ear that I am in pain because I am clenching my teeth but am so wrapped up in a discussion with someone that I am ignoring it. He knows if I take the pain pill in a timely fashion, I can often continue with my fun. He can tell when it’s joint pain, abdominal pain or headache pain. He can tell when nausea is trying to hit me. He can physically see my energy flow out of me like water down the bathtub drain. He knows.

4. Don’t take offense. My suddenly appearing symptoms that send us home have nothing to do with you. Go on with your fun. Lupus wolf taking a bite out of me does not have to take a bite out of you.

5. Continue inviting us anyway, especially with David along. As much as we love each other, night after night of just the two of us gets real boring.

How is David so good at taking care of me? He is proactive. He learns about my diagnoses by coming to as many of my appointments as he can. He asks my doctors his own questions. He listens to me carefully when I tell him how I feel. He helps foster healthy communication between myself and my doctors. He looks for nonverbal patterns. He keeps an eye on my medication side effects to learn when or if I should take them. He monitors how much medication I take too. It’s my fight, but he is my partner. He is far from perfect, but he is amazing. He has my back.

David, I love you. You so got this!