Talking About
Lupus

Talking About Lupus Is… Hard.

“I have lupus.”

If you have systemic lupus erythematosus (SLE or lupus), these may be the most difficult words you ever speak. How – or indeed, whether – you tell people that you have lupus is a personal decision. But it is important to remember that dealing with a chronic illness requires support, and people cannot offer their help if you don’t tell them what you need.

Reaching Out

All too often, people with chronic diseases such as lupus are hesitant about telling others about their condition. Particularly if you are young, it may be difficult to reveal what you perceive to be a weakness or something that sets you apart from your friends and colleagues. You may fear their reaction: will they reject you? Pity you? Dismiss your symptoms? Treat you differently than before? Even with friends and family with whom you have shared your diagnosis, you may hesitate to talk about how you feel (emotionally and physically) for fear of becoming burdensome.

However, failing to communicate with the important people in your life isn’t the way to deal with these fears, as isolation often leads to depression, stress and ultimately poorer lupus management. Open communication, on the other hand, gives others the opportunity to help support you through the challenges that lupus presents.

For example, one American study on the impact of lupus on married couples found that v.omen with lupus who shared their problems and feelings with their husbands during a lupus flare fared better than other women with lupus who experienced less emotional intimacy with their spouses. The researchers concluded that sharing their problems and feelings gave wives the opportunity to have their feelings validated and to receive reassurance from their husbands that they were accepted and loved unconditionally even though they were ill.

You don’t have to share your diagnosis or feelings with everyone in your life, of course. Rather, create a support network of people you trust, such as close friends and family members.

Joining a support group can also be helpful. Lupus is misunderstood by many peo­ple, so it is particularly important to have your experiences validated by others who are going through the same thing. See our list of Provincial Lupus Organizations to find a lupus organization in your area.

How to Tell Other People About Lupus

7 Considerations

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Plan Ahead

The first few times that you tell people that you have lupus, you may want to plan ahead and think about what you want to say. Different people need to know different things about the disease. Your employer, for example, will want to know how lupus will affect your ability to work, while your parents may need to hear reassurances that they didn’t “cause” your disease through something they did in your childhood.

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Anticipate Questions

Try to anticipate the types of questions that people might ask and prepare to deal with them. Think of a response for questions that you don’t want to answer. For example, if a co-worker asks, “Does lupus mean you can’t have chil­dren? ” you could answer, “ I’m not ready to discuss such a personal issue.”

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Take Charge

Don’t wait for a lupus flare to tell others about your disease. You will likely be too tired or in too much pain to express yourself clearly. Take charge of the situation by choosing when to initiate the discussion. Pick a time when you are at your best and your audience can give you their undivided attention.

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Express Your Needs

Some people will respond to your news with a sincere and immediate offer to help in whatever way you need. Others may worry that you will expect them to help more than they want to. Regardless of your audience, be sure to explain clearly what you need from them, even if it’s just their understanding.

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Educate

Lupus is poorly understood by the general population, so there is a good chance that people will have no idea what you’re talking about or will react based on misinformation about the disease. And because there are often no outward signs of lupus (or the steroids you take give you a “healthy, rosy glow’), there may be some disbelief or skepticism about your symptoms. Informing people about the facts of lupus will help them understand how it affects you and what you are capable of. Offer them brochures or fact sheets about the disease or direct them to reliable lu­pus websites.

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Listen and Understand

Don’t be so focused on what you have to say that you forget to listen to the other person and empathize with them – just as you want them to do for you. They will have questions and concerns, just as you did when you first heard your diagnosis. People’s reactions to your news will depend on your relation­ship with them. The closer you are, the more emotional they may be. Your parents may feel guilty, your husband angry, your best friend frightened. Although these emotions may seem like an extra burden to you, recognize that they come from con­cern for you. The greatest support you, your friends and your family can offer is to listen to each other.

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Get Help

In some situations, it is helpful to involve a third party. At work, you may want to ask someone from Human Resources or your Employee Assistance Pro­gram to help you talk to your boss. At home, a social worker can help your family cope with and understand your disease.

Information For Friends and Family

How you can help

When a loved one tells you that they have a serious, chronic illness, it is often diffi­cult to know what to say and how to help. Some people become distant for fear of saying or doing the wrong thing. Here are some suggestions to help you help some­one with lupus:

  • Don’t try to boost their spirits if they aren’t feeling receptive to it.
  • Don’t try to divert them. If the topic of their health is on their mind, then it is important to talk about. Allow the person the opportunity to talk about their illness and their feelings.
  • Try not to be afraid to talk about the illness.
  • Don’t be afraid of causing tears. You shouldn’t feel like you’re walking on eggshells around the person.
  • Reassure – don’t argue.
  • Communicate – don’t isolate.
  • Perform some concrete act You might offer to help with a chore such as grocery shopping or cooking. You might ask “how can I help you”?
  • Swing into action.
  • Get them out of themselves.
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Lupus Personal Stories

These articles and information are available from the
Everything Lupus: Resource Hub.