Your right to hurt and be heard

Lupus Foundation of America

Resource Content

Have you ever thought how nice it would be to have someone whose job it is to listen while we talk about dealing with life’s challenges? A dedicated listener. Not a problem solver. Not an advice giver. Just a person who hears what we say and acknowledges our need to speak.

And wouldn’t it be great if we always knew what to say to someone who is hurting? If the right response was on the tip of our tongues?

We each have the right to express ourselves. Expressing ourselves and explaining how we feel are necessary for effective communication. But when communication causes confusion, misunderstanding, and frustration, it’s not communication. In this article, psychologists Paul J. Donoghue, Ph.D., and Mary E. Siegel, Ph.D., examine how we speak, how we listen, and how we can be more effective at both.

Communication Breakdown

Sharon Taylor* was diagnosed with lupus when she was 28 years old. Now 36 and the mother of three small children, she is having a major flare of joint pain. For the first time since she was diagnosed, Taylor needs help to care for her children and do household chores.

“It has been really hard at times since I was diagnosed,” Taylor says. “I’ve gotten used to certain kinds of limits on my life. I never go out at night, and when my kids go to bed, I do, too. I know I’ll never be the kind of active mother and wife that I thought I would be. But this time, I’m scared, I’m frustrated, and terribly tired of being in pain.”

At times, when Taylor has gone through rough patches with her illness, she’s confided in her sister. “When I cried to my sister about what I’m going through, she said: ‘You know, you have to look on the bright side. It’s been eight years without a big flare-up. This just means you have to dig a little deeper for courage. Be grateful and stay strong. It could be worse.’” 

Frustrated and feeling strangely guilty by her sister’s response, Taylor says, “Of course, I’ve been grateful that I haven’t had a major flare-up in some time. But right now, I feel dreadful and frightened. If I’m going to talk about lupus, I either have to talk about it differently or to someone other than my sister, because I can’t stand the way I feel after her remarks.”

Taylor felt utterly deflated by her sister’s words. Like every person with a chronic illness such as lupus, she sometimes needs to talk, to vent, and to share feelings of discouragement, fear, sadness, and anger.

Why? Because living with lupus can be incredibly difficult and, at times, overwhelming. 

Expecting the Unexpected

When you have lupus, you often are confronted with these challenges:

  1. You may experience the disappointing fact that you often cannot do what you used to do. Major and minor activities that gave meaning, pleasure, income, and diversion may no longer be possible.
  2. Your hopes, dreams, and plans may be thwarted. A dance class, a trip, even a career might have to be delayed or changed entirely.
  3. You may grow weary of the constant battle with insurance companies, with the medical world, with employers, relatives, and others who lack compassion and understanding.
  4. You may be bombarded with fatigue, pain, and muscle weakness, and the side effects of medication. And these symptoms can be relentless and unpredictable. 
  5. You may feel different from the healthy and the strong. You watch others free to do strenuous activity in a carefree manner, while you battle feelings of inferiority and envy. 
  6. You live in a society that not only values health, fitness, and energetic accomplishments, but that also suggests, not too subtly, that anyone could be well with the right attitude, with positive thinking, and with faith and good humor. 

Certainly, Taylor and others with lupus need to try to keep a positive attitude and not give up in discouragement and despair. And of course they should try to focus on what they can do, rather than what they can’t do—and on what they have, rather than what they do not have. Yet they must also be free to discuss feeling dejected and disheartened, as well as their physical pain and distress, without being stung with unsolicited pep talks.

Taylor and all who have lupus need to talk honestly about their feelings and their health, and they deserve to be listened to with care and understanding. Sometimes they may not communicate in a manner that invites empathy. And sometimes those who need to be listening are instead offering advice or encouragement—or not really hearing what is being said to them. A few communication guidelines can help to assure more satisfying contact. 

Learning to Speak Effectively

You need to talk about what you are experiencing for the sheer release of pent-up emotion, but you also need to be heard and understood. Sharing your feelings directly lets you receive empathy and the comfort of being understood. Focusing on your emotions invites the one you are addressing to hear you. 

When you speak about yourself, keep the focus on you and what you are feeling. Avoid blaming and criticizing when you want your feelings to be heard. When you act out of your feelings and blame or criticize, you may prompt the would-be listener to defend himself rather than hear what you’re trying to convey.

Instead of this: You have no idea what I go through with insurance. You think it’s all so routine. Well, it isn’t. 

Try this: I feel so frustrated and angry trying to get a live person to talk to me at the insurance company. 

Instead of this: You keep telling me to take my meds. That’s easy for you to say. You don’t have to live with the way they make me feel.

Try this: I feel totally discouraged. The medications have so many side effects.

Instead of this: There’s no way I can go to Vermont this summer. So stop talking about it, OK?

Try this: I’m really afraid that I won’t be able to take the trip this summer. I feel so sick that I don’t see how I can make it.

The statements “You have no idea” and “You think it’s so routine” will probably trigger a defensive response rather than empathy. The person you’re speaking to may respond: “That’s not fair — I go through everything with you.” And the remark “Stop talking about the trip, OK?” probably would be met with a reaction such as “Someone’s got to plan ahead, for pity’s sake. Trips don’t just happen.”

Learning to express yourself in a way most conducive to being heard is beneficial, even necessary, for you and those who care for and about you. 

Learning to Listen

When you attempt to listen, focus on the feelings of the speaker. Avoid reacting with defensiveness, advice, and even, at times, words of encouragement. 

EXAMPLE: the speaker says, “I feel so frustrated and angry trying to get a live person to talk to me at the insurance company.”

Don’t respond with this: “They’ve got a million people trying to reach them. Don’t get so irate. That’s not going to help anything.” (The agenda here seems to be to stop the speaker from voicing her frustration rather than to listen to her.)

Or this: “Why don’t you call on a speakerphone and just work at your desk until they pick up? That’s what I do.” (The agenda in this instance is to give advice rather than to listen.)

Or this: “I know it’s frustrating. But stay with it because you really need to talk with them.” (In this instance, the focus is on keeping the speaker from giving up rather than on hearing her frustration.)

Instead, try this, in an effort to both listen and respond to the speaker’s concern: “That must be maddening, especially when you really need some answers.”

Or this: “You sound completely fed up with the insurance company.”

With the last two responses, you keep the focus on the speaker and on the speaker’s emotions and avoid giving your own reactions, such as advice, warnings, or encouragement.

EXAMPLE: Let’s say a friend or family member says the following. “I feel totally discouraged. Prednisone is making me look disgusting and is wrecking my stomach.”

Don’t respond with this: “You don’t look disgusting. Plus, it has definitely helped with the pain.” (Here, the agenda seems to be to make sure the speaker stays on the medication, rather than to listen.)

Or this: “Why don’t you try taking less of the prednisone? I don’t think prescriptions are ‘one size fits all.’” (The agenda here seems to be an attempt to solve a problem with advice, not to offer understanding.)

Instead, try this response: “You sound upset that taking the medication makes you feel unattractive. You seem leery of getting a new problem while fixing the other.”

Or this: “It’s so exasperating to try to help yourself by taking prednisone and then end up hurting your stomach and not liking the way it’s making you look at the same time.”

In each of the last two responses, the focus remains on the speaker and her feelings—not on what you think about what she said.

Finding a New Voice

Voicing your feelings, needs, and thoughts is satisfying when you are truly heard. But too often, you will not experience that deep satisfaction or be given space to express yourself, because the person you are trying to speak to is busy—even with good intentions—interrupting you. Too often, you will be met with advice, suggestions, opinions, defenses, and all manner of nonattention. Learn to recognize these forms of non-listening, and then guide your would-be, could-be listener away from these reactions toward responses that produce real connection.

These strategies can help:

  1. Express your need to be listened to with clarity and self-confidence and, as much as possible, without too much exasperation and frustration. 
  2. Be clear that you need to express yourself without having to fend off “help” in the form of advice and suggestions.
  3. Learn to be a skillful listener yourself, so you can lead by example. In other words, give to other people what you need for yourself. 

As you learn the skill of listening, you will be able to give to others what you hope to receive from them. The more you listen, the more you will recognize the non-listening behaviors directed at you. Resist these forms of non-listening, and ask directly to be heard. For example, you might say, “I know you are trying to help, but what I most need is for you to listen. It would help me if you would let me know what you are hearing from me.” 

Lupus will try your body and your spirit. Exhaustion and pain can tempt you to bitterness and self-pity. You might have to struggle mightily to avoid unproductive behaviors that hurt you and those you love and need. Intense feelings can be dominating. In order to control these feelings, rather than be controlled by them, you must recognize and accept them. You have a right to your feelings and a right to hurt, but you also have a right and a need to voice these feelings. Learn to talk about them in a way that gives you some comfort, peace, and hope.

* Name has been changed.

Paul J. Donoghue, Ph.D., and Mary E. Siegel, Ph.D., are the authors of these books: We Really Need to Talk: Steps to Better Communication; Are You Really Listening?: Keys to Successful Communication; and Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness. All three books have the Lupus Foundation of America Education Committee’s Seal of Approval.