Fibromyalgia is often referred to as an invisible illness. If something is invisible, other people are not able to use one of their most important communications senses (vision) to help them understand the situation. This is why verbal communication is even more important in the case of fibromyalgia. People with the illness may not have the normal recognizable signs and visual cues to let others know what they are feeling.

Counting on your verbal communication skills to express your feelings is important so that others will understand. If people with fibromyalgia learn how to communicate in a way that connects them to the significant people in their lives, they will ensure that both parties’ needs are being met. This will improve the dynamics of your rela­tionships and establish a good system of communication.

Good communication can be a way to help reduce anxiety, minimize anger, and pro· mote positive and supportive interaction. Both speaking and listening are part of good communication.

Be sure that what you are saying is…

♦        Truly what you are feeling.

♦        Direct and easily understood.

♦        Worth listening to.

♦        Respectful of yourself and who you are speaking to

Because communication takes place on several levels, it is important to understand that what you say and how you say it are part of the communication process. You communicate your feelings through words and gestures. Your family, friends, health-care professionals, and others interpret every aspect of your communication, which influences how they react to you.

For example, if you say, “You need to understand how tired I am today,” in a soft, explanatory voice while touching your husband’s hand, this communicates that you are requesting his understanding. On the other hand, if you say “You need to under­stand how tired I am today!” in a frustrated, loud, angry voice, while walking out of the room, the effect is going to be completely different.

In the first example, you are saying that you are tired, but you are also telling your husband that it’s not his fault. You are communicating that you would very much appreciate his understanding and that you trust him to accept what you are saying. Then he will know what you are trying to communicate is important. In the second example, the actions speak more loudly than the words. Your husband might interpret your loud, angry voice as “she feels I have done something wrong and that is why she is acting hostile toward me.”

By walking away after making that comment, you prevent further communication from taking place and indicate the other person’s opinion does not count. When expressing yourself, listen to what you are saying, notice your body language, consider the tone of your voice, and think about whether you are being considerate of the receiver’s feelings and needs.

Remember these important elements of communication and evaluate their appropriateness

to the situation:

♦        Body language                                                               ♦        Eye contact

♦        Voice quality and intonation                                    ♦        Rhythm and pacing of words

♦        Sincerity of manner                                                     ♦        Directness

♦        Response to expressions of emotion                     ♦        Self-confidence

♦        Setting, time, and place                                              ♦        Sensitivity to others’ feelings

♦        Clarity of message

Honing Your Communication Skills

In today’s busy world, communication happens in so many different ways, with so many different people, that it is easy to forget what it takes to be a good communicator. Taking the time to practice open, honest communication, and discussing subjects to prevent miscommunication is really important. There are rewards from learning how to practice better communication. Good communication can help with the following:

♦        Reduce stress and put someone at ease.

♦        Save time and energy.

♦        Promote greater understanding of each person’s feelings.

♦        Build closer relationships.

♦        Remove obstacles.

♦        Reinforce and clarify feelings about a subject.

♦        Express concerns and emotional feelings toward someone.

♦        Give support that can result in therapeutic outcomes.

♦        Help to educate.

♦        Inspire and create hope.

♦        Express beliefs that are paramount to who you are.

♦        Encourage further communication.

♦        Get feedback to ensure correct understanding.

As you will learn throughout this chapter, although it might take some time to become a good communicator, if you practice it until it becomes natural, the benefits will definitely outweigh the initial challenges.

Talking About Fibromyalgia

Good communication is a solution to many of the issues and situations that you and your family will face after a fibromyalgia diagnosis. It is often during these difficult times that communication becomes challenging. If you can recognize communication obstacles and apply new communication skills and patterns, you will improve your chances of effective communication. Be aware of the communication obstacles dis­cussed in the following sections.

Communication cannot go in just one direction. The feelings and needs of all parties must be addressed and met. Along with communicating these feelings, you must also discuss ways to improve the situation. It is much more constructive to not only point out the problems, but to come up with ways to eliminate them. Be sure you are expressing your feelings in a way that you do not make the people around you feel like you are blaming them for the feelings you have.

Remember, even though you need the support and understanding of your family and friends, they also need you to see things from their perspective. Put yourself in their position and understand how they must be feeling. Even if you are dealing with a chronic illness, don’t be discouraged. You are still able to help meet the needs of those around you. Don’t forget to listen to what others are saying to you.

Misplaced fear or Aggression

Misplaced fear or aggression can be interpreted by your family in ways that will dis­courage communication. You will weather the difficult times of this illness better if you are not ashamed to express your fears and anxieties. It is important to eagerly look for ways to explore solutions, to discuss your options with others, and to ask for help. Do not keep your feelings bottled up inside. There are times when you will need to vent or even cry. Let the members of your family know that it is helpful if they sometimes just listen.

Be sure that your family interprets your comments correctly. Ask them to repeat what they hear you say. If it is not correct, you will have another opportunity to better explain yourself. If you experience negative emotions, confide your feelings and wor­ries to a person who is likely to understand and whom you can trust. If you feel uncomfortable talking about certain subjects with a family member or friend, you might need to reach out to a more formal helper, clergy, family health care professional, social worker, counselor, or psychologist.

Nonassertive Behavior

Your communication style can change in the face of a chronic illness. A loss of self­esteem and a sense of hopelessness can make you unknowingly present poor body language, gestures, and facial expressions that communicate anguish and a sense of losing control. These actions, whether they are intentional or not, might make others uncomfortable and unwilling to be around you. If you choose to use negative words, everything around you becomes more negative. Pain can cause you to physically become hunched over and draw your body inward, expressing your discomfort and communicating to others a desire to be left alone.

Don’t ignore your pain, but try to recognize what effect it can have on your commu­nication. Try using more positive words than negative ones and practice expressing open body language. “Negative speak” can result in “negative behavior.”

Expressing Your Feelings

Expressing your feelings is one part of communication. But not only do you need to express yourself, you also need to decide with whom you will share these feelings and thoughts. It is important to pick a good listener if you feel like you just need to talk. You need to discuss solution options with someone who is willing to help you identify opportunities. Sometimes there is one person you feel most comfortable confiding in. But don’t assume that it has to be just one person. Different people in your life may play different roles, at different times, in helping you deal with the need to express yourself.

Picture This

When I first became ill with fibromyalgia, I believed my husband had no idea what it felt like to suffer with constant pain. I used to wish that he could just feel what it was like for a few minutes so that I would know that he didn’t think I was making this up or that I was exaggerating.

One day I overheard him talking to a friend and he said, ” … when we got fibromyalgia, things changed. You can’t imagine what it is like to be in constant pain “

I then realized that our communication had been so comprehensive that not only did my husband understand what I was feeling, but he was feeling it right along with me. Lesson Learned…

Communication can take the place of actually experiencing something, to understand it.