Growing

by Dr. Gary McClain, PhD

Changes are coming! Changes are coming!

So… what’s your first reaction when you read those three words? Let me guess. Oh wow! Enthusiasm? You just can’t wait? Or oh wow! Again? More? Why? Followed by some fear, frustration, disappointment, and lots of anxious thoughts. Maybe all the above?

Humans are wired to keep things as they are, to maintain whatever their day-to-day normal is, to avoid big gyrations. We fear being thrown off our game. If it’s not broken, why do I have to fix it?

One of the hardest parts about learning to live with a chronic health condition like a bleeding disorder is that it introduces change into your life, change that you didn’t ask for. A bleeding disorder is like having an uninvited houseguest that’s not going away. What is my guest going to demand this week? Well, let’s see. I suspect that one of your most important life lessons has been to accept that your bleeding disorder is part of your life, whether you have one yourself or are a family member.

Yes, change is part of life. The global pandemic that we have been dealing with has been a reminder that change comes whether we want it or not. But it has also taught us that we can weather change if we must. So, congratulations!

Now, the bleeding disorder community is seeing new changes coming in terms of treatment management. Opportunity? Potentially. But also change. So, if change presents opportunities, what’s the problem with embracing change? I can summarize the problem in one word: uncertainty. We humans don’t like change because it presents us with uncertainty. We want to know! Our desire to predict and control flies out the window. What’s next?

First, the Kicking and Screaming

Life is uncertain. You think you’re doing everything right. At least, you hope you are. But life gets in the way of our plans. An unexpected turn of events can change everything. An event that you didn’t expect, maybe didn’t even think would ever come your way. An event like an announcement of new ways to manage your bleeding disorder.

Nobody likes uncertainty. We want to know. We want answers. 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 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 preparing for the worst? It sure seems that way. But wow, we cause ourselves a lot of unnecessary anxiety in the process.

If you’re living with a bleeding disorder, or have a family member who is, you’re no stranger to uncertainty. Like when you’re watching to see if that slip and fall is going to cause a bleed. Wondering why your doctor didn’t get back to you on a question right away like they normally do. And now on the horizon, adjusting to a new regimen and anticipating how you might be affected.

Coming to Acceptance of Change

What can you do to at least adjust to change, even if you aren’t quite ready to embrace it with enthusiasm? Here are some ideas:

Accept life on life’s terms. When you accept where you are now in your life – and tell that critical voice to be quiet – you’re on your way to being more compassionate toward yourself. Along with freeing yourself up to start looking at what’s possible! How do you come to this place of acceptance? It starts with the messages you play inside of your head.

Give yourself some credit. You’re dealing with a lot. And there are days when the road can get pretty rocky. Remind yourself – every day – that you’re human and that you’re doing the best you can. Identify small and big victories and give yourself a pat on the back.

Accept that you are not in control. Life happens. And most of it happens regardless of our hopes and wishes. So, talk to yourself.

Gently but firmly say: “You can do a lot to take care of yourself. But you can’t control the outcome. And you can’t control what might come up along the way to throw you off course.” In other words, give up the battle before it starts. You’ll have a whole lot more energy left for much more productive thoughts and actions.

Ask yourself: What’s the worst that can happen? Vague concerns about your life can add up to big fears. So, take a step back and put some definition around your concerns. It might help to use a scale of one to ten, with one being “annoying” and ten being “catastrophic.” This will help you to have a more realistic view of the uncertainties in your life and also guide you in getting better prepared for potential outcomes. Don’t

Learning to Cope with Change

create potential catastrophes where they don’t need to exist. Be ready to do what you can to cope with those that do exist. I have adopted this phrase for myself, “I can only control what is; not what if."

Somehow you keep going. Because that’s just what you do. How? Because over time, you’ve come to acceptance. You can do it again. Accepting that life is uncertain, and change is just a part of life, does not mean giving up. It means making the decision to face life as it is, with an open heart.

We’ve all experienced change through the years in many as aspects of our lives, not just in our health care. I’m guessing in the process you’ve learned a lot about how to cope with change. Here are some of the coping techniques I use with my clients:

Review your foundation. What do you have to rely on in the event your boat gets rocked? Your strengths? Your support network? Your healthcare team? This is your foundation. Being aware of it will help keep you from feeling overwhelmed when you’re in a situation that feels threatening in some way. Review your foundation every time things feel uncertain and draw strength from it. This is a great way to build emotional muscle strength.

Consider how you have coped in the past. It might help to think back to situations in the past when the uncertainty of life weighed you down.

Recount times in the past when your chronic condition threw you a curveball. What did you do to get yourself through? As the saying goes, “You have survived 100% of what has been thrown at you.” This is a great way to identify coping skills you might have forgotten you had. Dust them off and put them to good use. Avoid the rabbit hole. Our minds have a way of throwing scary, worst case scenario thoughts in our direction. These thoughts are automatic. And it is only human nature to grab onto these thoughts and use them to make ourselves feel worse. I call that chasing a thought down the rabbit hole. Getting stuck in the rabbit hole can lead to further resistance to change. Here’s what I say to my clients: You can choose which thoughts you want to hold onto and which thoughts you want to dismiss. Acknowledge negative and unproductive thoughts and then let them go on their way. You can’t control your thoughts, but you don’t have to let them control you.

Honor your emotions. But don’t let them lead you around by the nose. When uncertainty causes you to wander down the rabbit hole of unproductive, catastrophic thoughts, lots of emotions are going to come up. Feel your feelings, talk about your feelings. When you hold them in, they just get stronger. Letting them out clears the way for more rational thinking. Give yourself encouragement. If you’re living with a chronic condition, you’re dealing with a lot. The worst thing you can do is to constantly tear yourself down. The best thing you can do is to treat yourself with compassion. Talk back to the voice of fear and hopelessness with a confident, steady voice of encouragement. “You’re doing the best you can.” “You can’t control this, but you’ve got a lot of support.”

“You’ve been down this road, and you got through it. You can do it again.” Along with: “And who knows? Things might just get better!” Get support. The best way to get out of your own mind is by enlisting somebody else’s mind. Sit down with a family member or a friend and talk about what’s going on with you. Share your concerns, your fears… your stories. This helps in a couple of ways. First, you won’t feel so alone. And second, saying something out loud helps you to recognize what might make sense, and what might not. In other words, you may decide that the story – and the underlying “facts” –don’t really hold up. Wouldn’t that be a relief?

Finding Growth Through Change

We are all a work in progress. We are all in a constant state of growth. Change helps us to grow, to learn how to cope with the curveballs of life, and to be wiser. Here are some ideas to grow through facing change:

Stay focused on the here and now. What’s going well in your life? What are the responsibilities in your life that need your attention? Balance out the uncertainty with what you can count on – and control – in your life. In other words, pay attention!

Have a game plan. Work closely with your healthcare team to create your plan, ask for support when you feel you might wander off the path. Working the self-care plan is the best insurance you have in the face of life’s uncertainties. One day at a time. Having a plan in place to take the best care of yourself is going to increase your self-confidence.

Stay informed. If you need information, ask for it. If you can’t get the information you need, ask why and when. Do your own research and talk to your healthcare professionals about what you’ve learned. Communicate any symptoms or side effects that concern you. Do everything you can to advocate for yourself. Look for opportunities to attend conferences and family weekends. Knowledge is power! Flood the fears with facts!

Bottom Line: Be Open to Opportunity!

When you accept the aspects of your life that you don’t have control over, then you can focus your energy on where you do have control. You can stop fighting with yourself. And the way forward becomes a whole lot clearer.

How about a shift in perspective? You can look at change and the uncertainty that accompanies it with fear and trepidation and dig your feet in to avoid it. Or you can embrace change and see where it takes you. Sure, there are risks on both sides. But it has been my experience in my own life, and in the lives of my clients who are living with chronic conditions, giving up the battle and opening up to change can truly revolutionize your life. You have a choice!

Here’s a question that might help: When you’re faced with change, ask yourself a couple of questions: What’s the opportunity for a potential benefit, even a long-term benefit, if I accept this change and make the best of the situation? And what’s the best I can do to be the best I can be, for myself and for the people I care about? Listen closely for your answer.

Change is part of life; nothing stays the same forever. Life is uncertain, that’s what keeps it interesting. So, let’s all say it in unison: Open minds. Open hearts. What’s next?

Gary McClain, PhDGary McClain, PhD, is a therapist, patient advocate, and educator, specializing in helping clients deal with the emotional impact of chronic and life-threatening health conditions, 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 each other and healthcare professionals, and to listen to their own inner voice as they make decisions about the future. His book, “The Power of Closure: Why We Need It, How to Get It, and When to Walk Away,” will be published by Tarcher Perigee in the spring of 2024. His website is: JustGotDiagnosed.com.