by Dr. Gary McClain, PhD
Published: Lifelines for Health Spring 2017
“I’m having one of those days when the world feels like it’s crumbling around me. I know you’re supposed to be able to live with a certain amount of uncertainty when you have a child with a chronic condition. But we’ve got some decisions to make about her care, and the outcomes aren’t guaranteed. This kind of uncertainty really takes a toll on parents. What do I do?”
My client described how a lot of patients and their loved ones feel when they are placed in the position of having to make a health-related decision. Living with a medical diagnosis – yours or a member of family – means being aware of the importance of making informed and thoughtful decisions. But what do you do when everywhere you look uncertainty seems to be staring back at you?
“I’m so afraid that...”
“If I could just get some kind of a
guarantee...”
“What if...”
Ever catch yourself using one of these phrases? If you do, I suspect it’s during one of those times when you’ve got a hard decision to make, you want a clear direction forward, and all you see around you is shades of gray. Yet again that unwanted house guest in your home – the chronic condition – leaves you at a crossroads and then demands answers!
Nobody likes uncertainty. We want to know. We want answers. We want to make perfect decisions. And when we’re faced with uncertainty, it’s only human nature to allow our imagination to go to town and fill in the gaps
with those stories we tell ourselves to satisfy our inquiring minds. Sure, stories at least give us something to think about, and react to, in the absence of real information. But, on the other hand, those stories are usually worst case scenarios that turn lack of information into misinformation. Are we trying to do ourselves a favor by getting prepared for the worst? It sure seems that way. But wow, we cause ourselves a lot of unnecessary pain in the process.
If you’re living with a chronic condition, or have a family member who is, you’re no stranger to uncertainty. Like when you’re waiting for your latest test results. Wondering why your doctor didn’t get back to you on a question right away like she normally does. Adjusting to a new regimen and anticipating how you might be affected. Or making a treatment decision! We never get used to uncertainty, do we?
Yet uncertainty is part of life. So what can we do when the urge to fill in those big information gaps with your own version of the outcome? Here are some ideas:
Get clear on what you’re dealing with. The starting place for making a decision about the way forward is to define the specifics of the situation: The decision to be made. The options. The potential outcomes. The risk factors. You’re in a better position to make a decision when you have clearly defined exactly what that decision is. Free-floating anxiety just keeps you stuck. So be clear with yourself on what you’re dealing with.
Keep antidotes for negative self-talk handy. When you tell yourself how scary and bleak the future looks, you are training your mind to focus on the negative side. Chances are that your view of reality will match your expectations. But like any poison, negative self-talk will shrivel away when zapped with your most powerful antidote – positive self-talk to balance out the negative.
Gather your fan club around you. One of the lessons of uncertain times is to build a solid support system. Who are the people in your life who help you to bring out your best self, and who rely on you to do the same for them? Make sure you keep them close. Spending some time with your support network is a good way to help you keep your focus on what’s going well in your life right now. Sit down with a family member or a friend and talk about what’s going on with you. Review the options with them. You know, Plan A, Plan B. Share your concerns, your fears... your stories about potential outcomes. This helps in a couple of ways. First, you won’t feel so alone. And second, saying something out loud helps you to clarify your thinking. And even to see the direction forward more clearly. How about looking at support this way: The best way to get out of your own mind is by enlisting somebody else’s mind.
Remind yourself how you have met challenges in
the past. Start your list of antidotes with your greatest successes. Don’t forget your key skills and personal qualities. Here’s one to add to the list: resilience. You’ve made decisions in the past, and you’ve done your best to make the right ones. So you know you have what it takes to face the next challenge.
Limit yourself to a few minutes of storytelling each day. Can’t quite let go of that need to indulge that need to create your own yarn? Okay, then. Give in. But on a schedule. Allow yourself to sit with your anxious stories for fifteen minutes, maybe twice a day. Time yourself. At the end of the fifteen minutes, put the crystal ball away and get back to the present.
While you’re at it, come up with a couple of alternate endings. For any given direction, there are any number of possible outcomes. So if you are going to create stories, then how about creating more than one? If a decision can lead to a negative outcome, can it also lead to a positive one? Make sure you balance each bad ending with a positive one.
Get informed. After you’ve identified exactly what it is that’s making you feel uncertain, identify resources you can tap into if needed. Some information-gathering might be in order here, on your own, or by reaching out to people who can give you advice. Sources might include the Web, your insurance company, healthcare professionals, and other families you have met through your support network. Flood the fear with facts!
Speak up. When you need information, ask for it. If you can’t get the information you need, ask why and when. Talk to your healthcare professionals about what you’ve learned. Communicate to professionals the potential outcomes that concern you. Do everything you can to advocate for yourself and your loved one.
Is it time to do the numbers? Your uncertainty may involve financial concerns. And money is always pretty scary to think about. Take a hard look at what you’re spending each week for medical-related expenses. Consider what expenses you might have in the near future. While all those numbers may not give you a warm and fuzzy feeling, at least you have a clear picture of what you’re dealing with. That’s another toward feeling more empowered. Ask for some help from the other people in your household who are involved in making financial decisions. After all, you’re a team.
Watch your self-care.What’s going well in your life? What are the other responsibilities in your life that need your attention? Eating healthy? Getting enough rest? Getting support? Balance out the uncertainty with what you can count on – and control – in your life. In other words, maintain your perspective! Your mind will be that much clearer.
Embrace your Higher Power.
Believe in something beyond the day- to-day setbacks. Your Higher Power can be found through a spiritual or religious practice, or it may be found in simply trusting in your own inner strength for strength and guidance.
Remember: Nothing is guaranteed, except this moment in time. You may not want to hear this, but here’s some tough love for you. Give up the struggle to be in control. You can’t go back and fix what you did or didn’t do in the past, you can’t control the future, and you certainly can’t control what anybody else is doing. The best you can do is to do your best to make the best decision possible.
Life is uncertain. The answers aren’t on our schedule. Take charge of your inner storyteller by being patient and seeking real information. When it’s time, you’ll know. And then you’ll harness your resources and face the outcome head on. Like you always do!
Gary McClain, PhD, LMHC, Dr. Gary McClain, PhD, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses,
as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, to communicate better with other family members, and to listen to their own inner voice as they make decisions about the future. He writes articles for healthcare publications and websites, facilitates discussions in social health communities, and conducts workshops on living with chronic conditions and Chronic Communicationssm. He maintains a Website, www.JustGotDiagnosed.com.