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Talking About Lupus Is… Hard.
“I have lupus.”
Reaching Out
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.
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.
How to Tell Other People About Lupus
7 Considerations
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.
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.”
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.
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.
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.
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.
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.
