In my work with couples who live with chronic illness and/or disability, upward of 90% report that communication is their primary issue. While the consequences of communication problems in other families may create conflict and related issues, in families living with chronic illness or disability the stakes are even higher.
I spoke briefly about the importance of good communication at a recent support group for caregivers, friends, and family members of people living with multiple sclerosis. The following are highlights of that discussion, but they may apply to all couples and families living with disability or chronic illness:
- Frequent check-ins during the day help others plan and prepare.
Both caregivers/family members and the person who has the illness or disability may benefit from speaking openly about his/her needs and desires. Couples I work with have reported much better outcomes when the person with the illness/disability tells loved ones what kind of day he or she is having at various times throughout the day.
For example: “My pain level is a 4 on a 10-point scale this morning. Can we go to the pharmacy now in case it gets worse later in the day?” Or, “This afternoon my fatigue is a 7, so I need some help with dinner.” One caregiver told us that she says something like this: “I had a very stressful day at work, and I am really tired tonight. I want to rest for a while. Before I sit down, is there anything you need me to do? It will be 30 to 45 minutes before I get up again.”
- Verbally establish boundaries and expectations to avoid hurt feelings, conflict, and guilt.
It is easy to fall into the trap of bottling up your feelings or sweeping minor irritations and annoyances under the rug. Resist the impulse to do this. Small things have a way of multiplying quickly when left unaddressed.
Many people are uncomfortable with conflict, or think that a good relationship is free of conflict. That is simply not true. The health of a relationship is better measured by how well people deal with conflict.
Setting boundaries and voicing expectations allows others to know what is and is not acceptable. It is often said that expectations can ruin relationships. There is some truth to that in the case of unrealistic expectations or those that are not discussed openly and agreed upon by all parties.
Couples and families rely and depend on each other—especially when someone has a chronic illness. Giving voice to your expectations and speaking up when someone crosses boundaries is the healthy way of functioning in a family unit.
For example: To voice your expectation, you might say something like, “My doctor’s appointment is at 2 p.m. I would like to leave here by 12:45 p.m. in case of traffic. Is that OK with you?” Or, if someone does not follow through on an agreed-upon expectation, you might let him/her know that he/she has violated a boundary by saying, “I expected you at 12:45 today. I feel very anxious when I am rushed. Would you please make an effort to contact me if you are going to be late in the future? I may want to make other arrangements.” Or, and this one comes up a lot: When asking for help, be specific by saying something like, “I need something from the garage for a project I am working on after lunch. Will you get the sewing box for me before you watch the game?”
This lets the other person know what you need, when you need it, and gives him/her a heads-up that you want/need it before the game. This prevents waiting around all afternoon or putting off work on your project until after the game. Giving him/her some advance notice also prevents interrupting his/her plan to watch the game.
When these discussions are done in a spirit of cooperation and initiated at times that are convenient for all parties (not during the heat of an argument, when one person is rushing out the door, or six months after the fact), they should be well received.
- Disability and chronic illness do not permit people to be abusive or inappropriate.
This is difficult for everyone to live by, but it is critical. No matter how miserable, frustrated, or disheartened people may be, we have to learn to relate to others without abusive, hurtful language or behavior. Tempers flare and nerves seem to short-circuit some days. Those are the times when we need to take a deep breath and ask for a timeout. Leave the situation (if you can) or ask the other person to give you some time alone.
Research shows that it takes at least 30 minutes for the chemicals released in your brain during times of stress to subside. It is best to wait at least 30 minutes before attempting to return to the conversation. During that time, find ways to relax—distract yourself. Rehashing the argument or developing your case will not extinguish the flood of chemicals surging through your body.
It is imperative to go back and finish the argument after everybody is calm and refocused. Ideally, the person who calls the timeout should be the one to bring up the matter again when ready to do so. As Albert Einstien said, “We can’t solve problems by using the same kind of thinking we used when we created them.”
If someone says something that is hurtful or abusive, whether he or she is a caregiver, family member, or the person with the illness or disability, it is important to set a boundary to let him/her know the line has been crossed.
For example: You may want to address it directly by saying something like, “I don’t like it when you talk to me like that—it is not acceptable/appropriate/cool.” Or, you may address it indirectly by saying something like, “Do you realize how you are talking to me right now?” This can be helpful if your loved one is unaware of how he or she sounds or doesn’t recognize the specific behaviors that are problematic. If your comments do not result in more appropriate communication, it may be time to leave the discussion. Be honest (gently) and tell your loved one that you do not want to continue the conversation until both of you can be civilized. Ask him or her to let you know when he or she is ready to resume the talk in a different tone.
A Word About Abuse
If you are being abused—verbally, emotionally, or physically—seek help. There are counselors and clergy in most communities who can help. Call the National Domestic Violence Hotline for information and resources in your area: 1-800-799-SAFE(7233) or 1-800-787-3224.
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