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.
It seems like I am always reading discussions that are focused on the challenges that families face when one family member has been diagnosed with a chronic condition. And so I want to share some of experiences that I have had with clients and their families, and what they have taught me through the years.
The biggest lesson that I have learned, and that I want to start sharing with you, is the importance of communication.
From my perspective in counseling patients and families, when one family member is diagnosed with a chronic condition, all family members are affected. In that way, everybody in the house is diagnosed.
A chronic condition means change for everyone in the family. How daily responsibilities are shared, new responsibilities, treatment regimens that everyone has to adapt to, adjusting to good days and bad days that the individual with the chronic condition may be experiencing, accommodating dietary requirements, financial concerns… and on and on.
Change results in a lot of feelings—anger, frustration, fear, sadness, disappointment. The family member with the diagnosis may be experiencing some or all of these feelings, depending on what’s happening at that moment, and so are family members.
But so often, nobody wants to talk about how they feel. They are protecting themselves from acknowledging feelings that may be uncomfortable or “negative” in some way. Or they are protecting the other family members, or so they think.
Family members may fear that they will say the wrong thing, or assume that the family member with the chronic condition doesn’t want to talk. They may all hope, unrealistically, that by ignoring their feelings, they will go away after awhile, or everybody will “just get used to it.” They may think that they need to “stay positive” for each other. Or, they may fear that if they start to talk about how they are feeling, the feelings will come out in such force that they will lose control, “blow up,” and do damage to the relationship. But we’re all human, right?
So what do you do?
You can start by talking about your own feelings, not just physical but emotional. When a family member asks that usual question, “How are you doing?” you might want to start introducing some emotional words. “I am feeling a little sad today.” “I am worried.” “I’m kind of mad.” Let them know what’s going on and how your diagnosis is affecting you emotionally.
Talking about your emotions can accomplish a couple of things. First, it gives you a chance to let out some of your own feelings and be heard. And, it communicates to your loved ones that talking about feelings is okay, that you aren’t holding back, and that you don’t expect them to.
And here’s another way to get the ball rolling: Ask your family member how they are feeling. “I’m a little bit sad today. How are you feeling?” “I’m frustrated about my new diet. How are you feeling about it?”
Often, because family members are at a loss as to how to get the conversation about feelings started, they need to take their cue—or get permission—from the family member who is facing the diagnosis.
Are you ready to start that conversation?
You may not get much response, at least not at first. Some families are better at the emotional stuff than others, regardless of the situation. But opening up communications is a step-by-step process. You may have to lay a lot of groundwork, starting by dipping your own toes into the emotional waters, and showing your family members that you can talk about your own feelings, even the uncomfortable ones. “Whew, I said it. And the house didn’t come crumbling down.”
You will be helping yourself by not bottling up your own emotions, and you’ll be a role model to your family members by showing them that talking about feelings—the “good” ones and the “uncomfortable” ones—is okay.
Keep the conversation two-way, or multiple-way!
By the way, I am not trying to promise you pie in the sky (my favorite banana cream or any other kind). I know that some families just aren’t hardwired for communication, and that family members can be downright insensitive. Still, I encourage you to give it a try. Sometimes family members can step up to the plate, in their own sweet time, and surprise you.
Now for your kids…
Children may need some additional help in opening up. Children learn to stay positive out of fear that they will cause their parents additional worry. They may also interpret your own insistence in maintaining a positive attitude as a signal that they aren’t supposed to express their own feelings. Start the conversation by simply asking your child is feeling, along with reassurance that you want to hear whatever it is they want to tell you, even the "scary stuff." Give a few extra hugs and reassuring words.