The First Step

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It Starts with a Mindset

The first, and quite possibly most challenging barrier you’ll have to address on this journey is your mindset: your attitude, perceptions, and beliefs about the road ahead with a long-term illness. Healing can only begin when a mindset clouded by uncertainty, negativity, and hopelessness starts to shift to one that embraces hope.

Internalizing a few core concepts can facilitate this mindset shift:

  1. You have choices in your healthcare that can shape the outcome of your journey.
  2. By having choices, you DO have control (don’t let anyone tell you otherwise).
  3. Health and wellness are shaped by body, mind and spirit, not merely the presence or absence of disease or disability.
  4. Well-being and an enhanced quality of life can be achieved in many ways.
  5. Healing is Possible.
What does 'healing' mean?
There is no standard definition for ‘heal’ or ‘healing’, and the act of healing – whether from long-term illness or another transformative life event – will look different for everyone. For purposes of My Journey, My Choices, ‘healing’ is a process of restoration to a state of wholeness and fulfillment; physical healing from one’s illness may or may not be a part of this process. Healing is a process by which well-being is achieved and quality of life is improved.

The process by which a shift in mindset occurs after a disease diagnosis isn’t linear or predictable. But a few mental steps are key to adopting the mindset you’ll need to take action and become an ambassador for your own health. The following sections will provide more information for each of these, and corresponding reflection activities for each section are available in Your Healing Planner.

Accepting the Journey

Being struck with a long-term illness may feel like being stuck in a bad dream. All of a sudden, your world has changed, and things that you once believed may no longer hold true.  Perhaps to cope, you’ve denied this new reality, hoping that you will soon wake up and life will be back to the way it was. This response is completely understandable; denial is a natural part of the grieving process when facing life with a long-term illness.  But no one can move forward when in denial, and overcoming it is a crucial step in the healing process. To get started, you must first accept that, whether you like it or not, you are on a journey.

Research Highlight: A 2014 analysis published in PLoS One examined the coping mechanisms and psychological and health outcomes in women diagnosed with breast cancer. The analysis found that positive strategies for coping with stress, including acceptance, were related to better well-being and health, while negative strategies, such as avoidance, were associated with poorer outcomes.

Many of you might be thinking something along the lines of, “I don’t want a #%&!ing journey; I just want to get rid of this disease.” If there is an easy fix for your long-term illness, you should absolutely take it. If a simple surgery, a well-established regimen of medication, or any other validated combination of therapies will cure your illness without having a major impact on your quality of life, absolutely go for it. But, if this simple fix doesn’t exist, odds are that you are on a journey.

It can be helpful to look at your diagnosis as an opportunity, which at this stage in your journey may understandably be a very difficult thing to do, especially if you’ve just been recently diagnosed. But for many people, being confronted with a long-term illness can be a turning point, and the motivation to live a more thoughtful, purposeful, and healthier life. Although it seems counter-intuitive, illness can actually be a life-enhancing, by forcing us to take stock of what matters in life, and for many of us, to nourish our whole selves for the first time.

Accepting your journey and the reality of your life with a long-term illness does not mean that your illness gets to define you or gain control over the choices that lay ahead. In fact, it means just the opposite. Acceptance is a step toward gaining control and becoming empowered; it is the first step on a journey which has the potential to bring out the best in you. It takes strength and courage to accept the reality of life with a long-term illness; determination and perseverance to commit to taking a proactive approach to your healthcare; hope to achieve healing. Let the journey ahead define you, not your long-term illness.

Grief, and all the emotions that comes with it, is common in the wake of a long-term illness diagnosis. No one needs to face grief alone. In addition to family and friends, a licensed psychologist can help support you through the grief process by providing you with coping strategies. Visit the American Psychological Association’s website to learn more and locate a psychologist in your area – you can filter results by specialty area, such as grief, health and wellness, or pain management.
Addressing Fears

Fear is a normal response to a long-term disease diagnosis. You may fear for your future, or that of your loved ones. Fear of pain, fear of dependence, fear of being defined by your long-term illness, fear of dying…

Much of this fear is often rooted in one hazy concept: the unknown. Being diagnosed with a long-term illness suddenly transforms our future from a well-thought out plan (even though we know plans rarely play out as such) to a black box, containing truths unknown. When faced with the unknown, especially as it relates to illness, it’s easy to take a worst case scenario approach. Oftentimes, all we know of a disease is its worst possible outcome, usually through personal stories of others, the media, or the Internet search that inevitably turns up the most dire outcomes of a disease.

Worst case scenarios rarely come to fruition. Most often, long-term illnesses follow a rather standard progression hovering somewhere in the middle between “worst case scenario” and “miraculous recovery”. When faced with the unknown, especially as it relates to a long-term illness, your mental state and outlook can make a big difference in your quality of life. Focusing on the worst case scenario can quickly lead to a negative spiral of anxiety, depression, and isolation: all conditions which are known to negatively influence health outcomes.

On the other hand, focusing on realistic alternatives to the worst case scenario – and better yet, best case scenarios – can instill hope, happiness, and optimism, all powerful forces in recovery and healing. Remember, most prognoses and treatment outcomes are based on the average patient. Why not aim for outcomes that exceed the average, or are even extraordinary? Someone is bound to achieve them, why not you?

Fear associated with long term illness is powerful, but you can harness its power for good. Fear can motivate us to take a proactive approach to our health and to do everything within in our control to tip the scales from “worst case scenario” to “best case scenario”.

“Hope is clear-eyed. It sees all the realities that you face, all the obstacles, all the problems, all the potential for failure. But through that, it sees as well a possible path to a better future. It’s not guaranteed, but it’s possible.” – Dr. Jerome Groopman, MD

Take Action: Download the  ADDRESSING FEARS REFLECTION EXERCISE

Motivation
What is most important to you in life? What brings you joy? What do you live for?

These questions all seek to arrive at the same answer, and the answer is important for the journey ahead. It is your life’s aspiration, your motivation to heal.

Answering these questions may be difficult to do, and the first answer that pops in your head may not be the ultimate answer you arrive at. To get to the core of your true motivation, you have to peel back the layers. To do so, it may help to keep asking yourself Why? So, your reflection might progress like this:

My motivation is to decrease my back pain. Why?

So that I can regain my mobility and strength. Why?

So that I am free to walk wherever I like. Why?

So that I can take a walk along the beach from time to time, like I used to do. Why?

Because I am at my very happiest, barefoot on the beach, watching the sun set. I want to experience that happiness again.

Think BIG! Start with your ultimate aspiration, and then work your way backward to figure out which areas of your health you, with the help of your healthcare team, can address to achieve it.

Discovering your true motivation is so important, because it centers you in your life’s meaning and purpose, and it helps instill focus, commitment, and determination on the road ahead. When you’re able to keep sight of your ultimate motivation to heal, you’ll be able to set and achieve goals and face challenges with more conviction.

A dream vacation, revisiting your childhood home, a reunion with an old friend, a physical feat, a big celebration, dancing with your partner, learning a new language…any of these things and a million more could serve as your motivation to persevere on the journey ahead. Focus on what brings you the most joy in life, and let that image be your guide.

EVIDENCE: The VA Office of Patient Centered Care is transforming healthcare for veterans by implementing a Whole Health model of patient care across VA facilities. At the core of the model is determining what matters most in life to each patient, and then having the patient work with a team of providers to achieve goals using integrative health care strategies that address all aspects of the patient’s health and wellness.

Evidence continues to mount showing the effectiveness of the VA’s approach and an integrative model of medicine and health.

Watch veterans’ success stories using the Whole Health approach.

Take Action: Download the Caring Ambassadors Identifying Motivators Reflection.

Establishing Goals
Once you’ve identified your motivation – what it is you want to live, heal, and thrive for – you’ll need to start thinking about the steps it will take to get there. You can think about these steps as your individual goals for healing.

Each goal represents both a challenge and an opportunity, and the accomplishment of each individual goal – big or small – is a reason to celebrate. What should your goals be and how do you identify them?

Here are some tips:

Work your way backward

Your goals and your motivation should be aligned. Start with the big picture: your ultimate motivation. What would need to happen to realize that vision? What about your lifestyle or the current management of your health would need to change? You may find it helpful to complete this activity to help you with this process.

Think holistically

Health and wellness aren’t only dependent on your physical state, so that shouldn’t be the only area your goals target. Take a look at the Integrative Health Ribbon  on the home page to identify the areas in your life that you’d like to improve. Then, you can start mapping out individual goals to target that area.

Inform your healthcare providers

It’s important for all your healthcare providers to be aware of the goals you set for yourself, so that they can prescribe or direct you to the best treatments and resources to help you achieve them. Share your goals with your healthcare providers. Better yet, use some of the time with your provider(s) to set your healthcare goals.

Move forward

Once you’ve given some thought to what your goals are, you’ll need to start taking steps to achieve them. The healthcare options section of this site will provide you with additional information about all aspects of healthcare, including evidence, tips, and treatment options for you to explore. Then, you can take action by outlining an integrative health care plan that includes all of your goals and start action planning to achieve them.

Contemplating Change
“I spend my day trying to convince people to stop killing themselves, most people fight me all the way.”            — Rob Gleser, MD

Change is hard.

You’ve established goals, or at least thought about them. But oftentimes, when it comes to taking the first step in making changes…we hesitate. To proactively take control of all aspects of your healthcare when faced with long-term illness, change is necessary. The downside is that change is hard, and uncomfortable, and often even scary.

“What are you scared of?” Opening this line of inquiry can help get to the core of what roadblocks an individual is putting in their way.

Does what you eat define who you are? Does trying different methods define who you are? Ask yourself these questions and try to figure out what you are holding onto—is it more important to you than your health? You’ve probably heard people say that they’d rather die than cut down on beer or steak or sweets or something else that they enjoy. If you find yourself making similar statements, to take a moment and examine where your priorities lie.

Really?

In the end, the root fear often comes down to a very common anxiety about change. This is about change, and change can be scary—but that doesn’t mean it’s not worth giving it a chance.

Start Small

You don’t need to make big, overwhelming changes to improve your health. Start with small, manageable steps that you will be more likely to follow and enjoy. You may very soon find out that even small changes to your health plan can make a marked difference in how you feel. And by taking more small steps to improve your holistic health, you’ll increase your confidence in your ability to make even more changes and keep moving forward.