Talk With Loved Ones

Good communication is the basis for any strong relationship. When one of you is living with a chronic illness, it’s a must-have.

I’m hopeful that getting some tips for better communicating can help me talk to my sister more easily.

Take an active role

You’ve heard that communication is a two-way street. That means both people are involved, with one talking and the other listening. No matter which role you’re playing, make sure you’re actively participating. Consider these tips as you communicate with your loved ones.

Use sentences that start with “I.” Focus on directly sharing your views and feelings.
Don’t assume you know how the other person is feeling.
Realize that you can’t change the other person—or anyone else, for that matter.
Accept the other person’s feelings, whether or not you can relate to or agree with them.
Avoid playing the role of the victim.
Use a bit of humor when you can.
Work to listen as much as or more than you are speaking.
Make it your No. 1 goal to understand your loved one.

Teach them about your lupus

Just as with your doctor, the bottom line is to be honest and candid with your loved ones. Yes, it may get tiring talking (or complaining) about your symptoms. But the only way they can learn how you’re feeling is if you share it.

Whether it’s with a family member, an old friend, or a new romantic relationship, there are some tips to talking about your lupus.

Explain what lupus is.

Look for online sources you can trust. Or use the Basics of Lupus section on this site to help.

Explain how you’re managing and treating your lupus.

Tell them what it takes, day to day, to live with it—and any ways you have to adjust your life because of lupus. Discuss your medication regimen, if it feels right.

Describe a lupus flare.

One of the hardest parts of living with lupus is the unpredictability. Prepare your loved one by letting them know what a lupus flareflare: a sudden increase in disease activity. is and how having one affects you.

Talk about your triggers.

Make sure your loved one knows your triggers so they can help you avoid them.

Be ready to talk about lupus

You often may find yourself in tricky situations because of lupus. For example, cancelling another get-together or asking for help with the kids again can get tiring to explain. To help, have a few trusty phrases ready when you need them.

Think about the issues you face most with lupus. Then create phrases with a simple explanation. We have some examples you may want to start with:

If you have to cancel plans

“I’m sorry I have to cancel today. I didn’t expect to be sick, but lupus is very unpredictable.”

“I’m sorry I have to cancel today. With lupus, severe symptoms can come on very fast and that’s what happened this morning.”
When someone says you don’t look sick

“I know I don’t look sick, but I actually feel really bad. Lupus is misleading because it damages internal organs with almost no outward signs.”

“I know I don’t look sick, but sometimes I wish I did! Lupus is a serious disease that attacks the inside of my body, so there’s not always a way for people to see what’s making me so sick.”
For those times you’re feeling foggy

“Would you mind repeating that, please? I have lupus, which can sometimes make it hard for me to keep track of what’s being said.”

“Would you mind repeating that, please? I need just a moment to gather my thoughts. Lupus can sometimes make you feel forgetful, so it takes me a little effort to keep up.”

Write these “hip-pocket phrases,” or your own, on a card to carry with you to use anytime, anywhere. Practice saying them out loud, either on your own or role-playing with a friend. With enough practice, you can easily remember them—and you’ll feel more confident saying them.

Intimacy is important

Lupus can be especially hard to discuss in romantic relationships. But your honesty can go a very long way. Take the leap and plan time to talk about how lupus affects you physically, emotionally, mentally, and sexually. You may even want to get tips or advice from your doctor about how to tackle these subjects.

You may find that your self-esteem and self-image have taken a hit by lupus and some of the medications that treat it. That can make you want to keep intimate relationships at arm’s length. Realize that someone who loves you often sees you through a much kinder lens than you see yourself.

Understand their emotions

While it’s great to share as much as you can with your loved ones, know that it may be overwhelming to them. Rest assured that this information is all valuable. You simply may need to talk about it in stages or smaller doses.

It’s common for partners of people with chronic conditions to feel a range of emotions:

Fear or helplessness, especially during a flare
Uncertainty on how to help you with symptoms
Low self-esteem

No matter what either of you is feeling, honest communication is one good way to get through it. Be confident in who you are. You’re so much more than lupus.