Role clarity: For patients and loved ones

“Family isn’t always blood.  It’s the people in your life who want you in theirs: The ones who accept you for who you are.  The ones who would do anything to see you smile and who love you no matter what.”

— Maya Angelou

The role of a loved one, be it the person closest to you, family, friends, or a caregiver, is one of the toughest and most often misunderstood, second only to that of the patient.  It is for this reason that it is incredibly important to regularly seek to understand each other and to provide clarity along the way as roles evolve and sometimes intertwine in the need to be understood, heard, and seen. In this article, our intention is to clarify how all of these roles throughout the cancer journey evolve and what may be needed along the way to preserve the good of all involved. 

I fundamentally believe that it begins and lives with one word: empathy.

According to the Webster’s dictionary, empathy is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner.

That’s a lot.

The altruistic nature of empathy is a cornerstone of the healing journey, and for it to be most holistic, it must exist across all roles.  You cannot truly love or be loved without empathy.  For you see, it is not just empathy for the patient that is required, it is also empathy for the loved ones.  Each party in the complex relationship of navigating the cancer journey has a responsibility for keeping empathy at the center and looking through its lens in every interaction.  It is by no means an easy thing to do, but as the saying goes, nothing worth doing is easy, but it must be done.

So, let’s first begin by understanding the role of the patient. 

The reason I believe that it is the most difficult role is not just because of the illness, but because the patient also has the least amount of control in the grand scheme of the journey.  For many, the diagnosis alone is so staggering that the very idea of being is often an insurmountable challenge.  On top of that, most patients experience guilt about becoming a burden on others, especially when they have been in the primary role of caring for the family or they have been largely independent and self-reliant. 

Even those on the other end of the continuum, who have tended to lean on others, will often find themselves in a bit of a fog as to what they actually need in order to fully cope with what they are about to embark upon when they first learn of their cancer and especially as they navigate through the journey of treatment. 

For this and many other reasons, taking the time to really understand the needs of the patient and allowing the patient to also take time to think through what they need is extremely important.

So how to best do this?  A few simple thoughts to get you started.

Advice for the patient

1 | Don’t make them guess

It is critical that you, the patient, tell people what you need and don’t need. If you don’t know, say you don’t know, but don’t assume they will figure this out on their own, because they don’t know either.

Remember, the first key piece of empathy is the action of understanding. The only way to truly help someone understand is to clarify, explain, express so that they can do their best to understand your needs and support you.  If you need a few minutes by yourself, tell them; if you need their company but don’t want to talk, tell them; if you just need to be held, tell them. Be clear with what you need and be kind in letting them know it.

2 | Know when to take a personal time-out

Taking time to be alone/in a quiet space is often one of the most restorative things you can do. This is especially true in the days following chemotherapy. So, find the daily routine that works best for you in the days where you need the rest. If your caregiver lives with you or is with you all day and you need a bit of space, let them know so that you can restore and heal. Being able to de-stress and keep the balance of your day in check is paramount in not just healing, but also coping. For those facing living with cancer as a chronic condition, the ability to have balance and personal routines that help your body is non-negotiable.

3 | Remember to say thank you

Express your gratitude for the people taking care of you – just say thank you!  This will sometimes take effort, especially on days when you’re feeling really unwell, or you’re somewhat altered by the effects of the medications. Write these words on a post-it or a piece of paper and keep it where they can see it:

“Thank You for All You’re Doing to Help Me Heal.”

It will help them to keep going on dark days.  All of this is part of the altruism of the healing process.  Gratitude is a healing agent.

Second, and crucially important to understand, is the role of the primary loved one. 

I choose to say primary loved one because this is the person who is doing the majority of the day-to-day support and caregiving.  They could be a family member, a friend, or a hired caregiver, but irrespective of the nature of their lineage to the patient, they need to feel love for the patient, and thus empathy.  Not everyone is cut out for this role and whoever steps into the role needs to be prepared, while also knowing when to enlist the help of others to carry the load forward.

So how to best do this?  A few simple thoughts to get you started.

Advice for the primary loved one

1 | You’re not Florence Nightingale

For those unfamiliar with Ms. Nightingale, take a moment to look her up, and you’ll learn that she set the worldwide gold standard for nursing over a century ago. Truly remarkable. That is not your role. Your role is to understand the day-to-day needs of the patient and to help them get through each day/step with as little pain, stress, and fatigue as possible. To help keep their day-to-day organized and manageable. To genuinely listen to their needs and to help find the simplest solutions to their challenges. And when you don’t know, get help from someone who does and who can help. You’ll be surprised by the number of people who want to help you, but just don’t know that you need the help. Just ask.

2 | Know when to take a personal time-out

Fatigue is not just for patients. Unfortunately, primary caregivers face strong challenges with burnout, not only because of the emotional toll, but also the physicality of the role. Depending on the needs of the patient, some require full assistance while others may not, but may need more emotional support or support with the care of others they may have looked after before their diagnosis. This is especially the case for those with children. In order for you, as the primary loved one, to take care of the patient, you also have to take care of yourself. Take time to ensure you are eating well, getting rest, and that you have a support group or outlet to help you cope. Even if it is taking 20 minutes a couple of times a day to sit somewhere quietly and breathe or taking time to rest while the patient rests. It will restore you and help you be well.

3 | Remember to lift them up

As the great Maya Angelou said, “Be a rainbow in someone else’s cloud.”  Simple words of kindness, like letting the patient know they are courageous, telling them you are proud for how they are handling the journey, making them smile – these are all enormous healing agents for patients in the battle. It can make an immeasurable positive difference in a patient’s day just to hear kind words or see a genuine smile. And while you don’t know the depths of their plight, you can help lift them up, even for a moment, or a day.

Unseen but affected

Last, but certainly not least, is a group that is unintentionally but yet sadly often left out of scope – those who fill the role of being deeply affected by the patient’s journey, but not directly acknowledged, per se. The unseen. They do not do the day-to-day caring and chores because they are either too young, or too elderly, or they live far away, and while they love the patient, they are often left out and feel unnecessary, even though to the patient, they are life. We have a separate article fully dedicated to this important group and how to communicate with them, especially with children, about cancer, the journey, and the healing process. Our intention in so doing is to help lend a voice and perspective on how those in this group play a critical role, while also having empathy for their own difficult process throughout the journey.

Key Takeaway

And so as always, we leave you with a key takeaway. If you remember nothing else about this article, please know this: don’t assume people know how you feel, what you need or don’t need or that you know how they feel, what they need or don’t need.  Take the action of understanding, being aware of, and being sensitive to one another’s needs and feelings. Have empathy.

With love,
Amelia O.