Gary McClain, PhD, is a therapist who specializes in helping clients deal with the emotional impact of chronic and life-threatening illnesses.
A client of mine who I’ll call Elena sat across from me in my office. She slumped in her chair, with her arms crossed, as if she had just suffered a major defeat.
“What’s going on?” I asked her.
“It’s only been a week since I received my diagnosis. That was a lot to take in, and I’m still trying to digest it. This morning, I met with my doctor’s nurse practitioner to talk about my treatment regimen and what I have to do to take care of myself. I know he meant well, but still. I was already feeling like my life had been turned inside out and he pretty much confirmed it. He described what my life needs to look like if I am going to manage my condition and, wow, it was a lot to take in.”
Elena shook her head and said, “The goals he set just seem totally impossible. How can I completely change the way I live overnight?”
Feeling overwhelmed at first is normal
I could see how frustrated she was feeling, as well as afraid. I see this often in my newly-diagnosed clients who are in the process of learning about the demands their chronic condition is going to make on their lives. They have been living a certain way for years, maybe decades. And suddenly they are being told that they are doing it all wrong, and being given a list of changes they have to make.
Getting from here to where they need to be can feel like an uphill climb. And their healthcare professionals may be telling them they need to be at the top of that hill today, if not yesterday.
I have learned that healthcare professionals don’t have a lot of time to spend with their patients. As a result, they have to lay out what needs to happen and leave it to the patient to take responsibility and take action. But healthcare professionals, in their desire to get their patients on the right track as soon as possible, may appear to not be sensitive to what this means for someone who is struggling to cope emotionally with their diagnosis. What may seem logical and absolutely necessary to a physician may feel overwhelming to a newly diagnosed patient. And patients are trying to take in so much new information, while they try to come to terms with their diagnosis, that they may not even completely understand what they need to do to meet the goals that have been set for them.
In other words, I don’t automatically assume healthcare professionals are being unfair or insensitive. But I do think they are really busy, and don’t have a lot of time to explain, teach, and create action plans. They often leave that up to their patients. And for a newly diagnosed patient like Elena, this can feel like being set up for failure.
If you are newly diagnosed, are you feeling like Elena? Or, looking back to when you were first diagnosed, did you have a similar experience?
Here are some ideas for coping when you’re feeling overwhelmed about the road ahead:
Sit down and draw a map. Your map of the road ahead. Medication regimens. Lifestyle changes. Any self-monitoring you need to do. How often and for what reasons you should be in touch with your doctor. And any other responsibilities your doctor laid at your doorstep. Not sure how to get to where you need to go? Got some big gaps between here and there? That’s fine. The purpose of this exercise is to figure out what you know now, and what you don’t know.
Take a deep breath. Sure, you don’t have all the answers. That uphill climb may look even steeper than you thought it did. But it’s better to know than not to know. Did you identify a lot of gaps in your information? Congratulate yourself. Now you probably have a sense of what you most need help with.
Do some digging. Your healthcare team may have suggested some information resources for you. Or you can do your own research online, sticking with reputable healthcare websites, like the sites of treatment centers and associations dedicated to your specific condition. And don’t forget to check out all the areas of this website. You might be surprised at what you learn about your condition. Also, I have to be honest here: going forward, it’s going to be really important to be your own advocate, and that starts with getting educated on your condition and its treatment.
Get started on doing what it’s clear you need to do. Let’s say you were diagnosed yesterday. You may have been given a prescription. Okay, follow the directions on the bottle and get started taking your medication. That’s a small step, but a critical one. Your doctor may also have talked about a diet change. Exactly what you need to do may not be clear, but chances are you at least have an idea of something you should eat more or less of. That’s another small step, but an important one. Your doctor may have told you to make other lifestyle changes: more activity, less activity, activity at certain times of the day. You won’t know how any lifestyle changes will affect you until you at least stick your toe in the water. Then you’ll quickly have an idea of what makes sense and what needs further clarification. The point here is to take a few steps toward what your doctor has said is the right direction. This will help you to know what you do or don’t understand about what you need to do to manage your condition.
Make a list of questions. And I’m going to be honest again: You will find that your time with your doctor is going to be a whole lot more productive and a lot less frustrating if you go in with specific questions to ask, rather than wringing your hands in confusion and helplessness. Now that you have done your research, focus on any gaps you might still have. Gaps might include expectations that aren’t clear, or any directions you were given that you don’t understand how to comply with.
Update your doctor on progress to date. Let your doctor know what you’ve been doing to follow his or her directions. Be honest. It can help a lot to keep a journal, recording what you are doing to follow your doctor’s recommended self-care plan along with any questions or concerns you have. Bring it in and go over it with your doctor.
Get on your own side. The voice of self-criticism just adds more stress to an already stressful time. Remind yourself that you will become an expert in your own self-care. That expertise will develop over time, with two steps forward and maybe a step back here and there. Each setback is an opportunity to learn.
You, your new diagnosis, and the road ahead. Take it one step at a time, starting with where you have the most clarity. Get support on filling in any gaps. Each small step leads to the next step. Small steps add up to big strides!
What was difficult to face when you were newly diagnosed? What helped you? Share your experience and advice with our community by commenting below.