Gary McClain, PhD, is a therapist, patient advocate, and writer who specializes in helping clients—as well as their family members and professional caregivers—deal with the emotional impact of chronic and life-threatening illnesses.
I often talk to individuals who have been diagnosed with a chronic condition about the disagreements they have with their partners regarding their healthcare. Sometimes they bring their partner in so the three of us can talk together.
Here’s an example:
Jennifer is being treated for a chronic condition that causes extensive pain and fatigue, as well as, on occasion, more severe symptoms that have left her feeling not only extremely ill, but fearful about what might be going on with her body. She is taking multiple medications, which cause additional side effects. Jennifer’s doctor has also recommended ongoing monitoring, including an invasive procedure that leaves her debilitated for a few days afterward. When she has a flare-up, she insists on going to the emergency room, which may result in additional testing.
Jennifer and her physician feel that this is currently the best approach. She feels that, despite the discomfort, her medications keep her condition managed. The ongoing monitoring helps her feel more secure. However, her physician has also discussed alternatives to the emergency room visits.
Jennifer’s husband, Mike, has expressed frequent concern regarding her treatment, to the point that they sometimes end up arguing. He thinks that she is taking too many medications and, based on his own Internet research, feels that some of the medications she is taking are doing more potential harm than good. He questions the need for the invasive testing and describes how hard it is to see her in such discomfort afterward. And while he accompanies her to the emergency room, he emphasizes that he only does so to be supportive.
Mike has done his own research on Jennifer’s condition and is convinced that she could be treated with less medication and less invasive monitoring. He has also found physicians in their area that he wants Jennifer to meet.
During a recent discussion, Jennifer lost her temper at Mike and said, “This is my decision to make.” Mike replied, “This should be our decision. After all, we’re in this together.”
So what’s going on with Jennifer and Mike? Basically, they have two different perceptions of the best way for Jennifer to be treated for her chronic condition: her way and his way.
With clients like Jennifer and Mike, I often feel like I am the mediator between two people who have two different views of treatment, sometimes polar opposite views. But they have the same goal—for the individual with the chronic condition to be as healthy, and live with as much quality of life, as possible. Is it possible to get to an “our way” somewhere between the two sides?
How are you and your partner feeling about your treatment? Whether you agree, somewhat agree, or just plain disagree, it may be possible to find a path that you can travel together. It starts with communication.
Here’s how to get started
Remind each other that you both have the same goal. When two people each have their own perceptions of how things should go, it’s only human nature for what is intended to be a discussion to turn into an argument, with both parties trying to be right. When this happens, you risk losing sight of the goal, which is to make sure that someone facing a chronic condition receives the best healthcare possible. So it can help to start out by reminding each other that everybody wants the same thing.
Clarify your position(s). Each person involved in the discussion should calmly state their position, including why they are concerned (or not concerned) about the treatment approach, and what you think and why you think this way. Get specific, including any examples that might help to explain your position—e.g., “Last Sunday, I was feeling…” or “The information that I have been reading…” If you have some information to share, this is a good time to do it.
Take responsibility. Focus on your own experiences—as either the person facing the chronic condition or as a loved one—rather than making the other person wrong or placing blame. Remember to use the “I” word to clearly state what you are thinking and feeling. And avoid the “you” word, which can seem accusatory or patronizing to the other person.
Listen…and hear. It’s easy to become defensive when someone you care about disagrees with you, to assume that they don’t understand what you are going through, that they are only trying to make you do things their way, or that they are only worried about themselves and not you. Remember that while they are walking in their shoes, not yours, they’re also feeling pretty uncomfortable. Hint: you might want take turns admitting that you both feel kind of helpless at times because you aren’t sure what’s best.
Make a conscious choice to stay positive. Again, this is about working together and feeling closer in the process. It’s all good. When things start to get tense, take a step back and reconfirm that this conversation is about two people who love and care about each other facing a medical diagnosis that is affecting both of them. A sense of humor can help—e.g., saying “Here we go again,” with a smile.
Consider meeting with the physician. It can be difficult for the person being treated to explain the ins and outs of their treatment or to answer questions that family members might have. This can leave family members feeling confused, which can in turn lead to more fear and frustration. It might be helpful to meet with the physician as a couple and have a conversation about the treatment. This way, everybody is hearing the same information.
Find a common ground. Again, the purpose of this conversation, and those that should follow, is not for one person to persuade the other person to see the world the way they do. Most likely, that’s not realistic. However, you may discover that each person can make a few adjustments in their approach to help the other person feel more comfortable. Maybe it’s time to get that second opinion, ask your doctor some new questions, or suggest an alternate treatment and get his/her opinion.
Be okay with agreeing to disagree. While you may be able to make some changes in the treatment approach that you can both agree with, you may not be able to. What’s most important is that everybody understands each other’s position.
Remember that nobody’s going it alone. When one person in the house is diagnosed with a chronic condition, everyone in the house lives with that diagnosis. So try to understand each other’s concerns. Clarify what you can each do to communicate better in the future, as well as to be more emotionally supportive.
Keep the dialogue open. Communication is an ongoing process, so keep the process going. Now that you’ve cleared the air and have come to an understanding of each other’s position, then you have a firm foundation for further discussion.
Each and every day, remind each other how much you care about each other. Show. Tell. Repeat.
Remember: It’s not about you. It’s not about him/her. It’s about us. We’re in this together, partners on the same journey. How can we be a team?