It was a flashbulb moment for me. A phone call. Etched into my memory forever. Mother’s Day 2022 and my birthday. I couldn’t go home to celebrate. My mom would have breakfast with my dad and three siblings at a nice restaurant. Missing the day was sad and she had been dropping hints that I should make the effort to travel, but it was too far and expensive to justify.
It was on that day after dialing my parents’ number as I usually do on the weekend. At most, I thought it was possible I would hear some news about a retirement. I was wrong.
Multiple myeloma. My dad. Cancer. We found it early. It’ll be taken care of. Not that big a deal. Words designed to comfort but not all true.
Still on the call, I Googled the words… multiple myeloma. Thoughts begin to race through my mind. Is this why my dad has been losing weight? He mentioned something before, but he said he was fine. Cancer. A blood cancer. What is the prognosis?
My family’s journey with my father’s chronic illness is not over yet. On that Mother’s Day, we started the first step and soon learned that in the early days of a parent’s, illness, their world and yours can change. The schema that we use to understand the world and the building blocks of our identity begin to wobble. Cracks that we never noticed in the walls become chasms and the foundation can turn into sand. Worrying about our personal health is normal, casual for most. But the fear of what would happen to the people we care about most when they become sick is much more palpable and challenging to navigate.
This article is designed to help people help their loved ones. Let these next four strategies help guide you on your journey in helping them with their journey. My advice comes from the perspective of having both experienced the shock of a loved one’s unexpected chronic illness and having had to live with my own.
1. Listen to what your fear is trying to tell you.
In my experience, the best way to deal with fear is to listen to it. Bear with me. Fear is an emotion that tells us, “Danger ahead.” When watching a scary movie, we want to cover our eyes because we know something bad is around the corner and we can’t stop it from coming. Fear fills us with energy and attention. Suddenly we can hear our hearts beat and hear things further away. Our senses become heightened, and we face a decision. Contrary to what we often think about these unexpected changes in our senses, if we listen closely, fear is telling us to survive.
The heightened senses that we feel when our bodies and minds get scared are there so that we can protect ourselves. Use them. Use these senses to think and act. Think about what you need to be safe and what you need to survive. Then breathe and thank your body and mind for bringing these things to your attention. Do your best to fulfill those needs.
The key is to acknowledge the gift of your fear so that it does not have to overwhelm you. When we don’t listen to our fear and the “danger” persists, then the fear must work harder to come through and this struggle can make those uncomfortable feelings worse.
2. Allow your loved one and yourself space and time to process the new diagnosis.
The simple act of visiting a doctor for an annual visit can be frightening. Even if we have zero concerns about our health and are simply fulfilling our duty in preventive care many of us get nervous. There is even something called “white coat syndrome” that is believed to increase some people’s blood pressure higher than their normal level simply by being in a medical office with medical personnel. If you or someone you know experiences this, imagine what it might feel like then to be at the doctor’s when you have reason for concern. Thoughts might begin racing, ideas become cloudy, and our listening skills can also suffer. Interpreting everything the doctors explain to us is not easy.
It is important to give a loved one with a new diagnosis time to process. Have you ever instinctually asked someone you were watching a movie with who a new character is, forgetting that they’ve seen all the same things you’ve seen and are probably asking the same question? This is a similar scenario to when someone receives a new diagnosis. They might not even fully understand what disease they have at first, and they certainly will not have all the answers. The best way to show your support is to make sure that you take time to listen and pay attention. If a doctor doesn’t use the word “cancer” in their explanations and simply substitutes the term with the name of the type of cancer, the patient may even leave the office not realizing they have cancer at first. Acknowledging progress and new knowledge is a validating step in gaining what control we can.
3. Be present and take notes.
Receiving a new diagnosis, especially of a chronic disease, is like starting a new job in some key ways. You are tasked with new responsibilities, expected to perform successfully in certain ways and you have to quickly digest a lot of new information. In short, a new diagnosis is a daunting gauntlet and we don’t even get paid!
This is why if your loved one allows you access, some of the best ways to support them are easy. There is a long-term Harvard study that has been looking at different factors that impact longevity. It found that those who felt that they could rely on people close to them when the going gets tough lived longer. One of the researchers, Robert Waldinger says, “Loneliness kills. It’s as powerful as smoking or alcoholism.” So keeping your loved ones feeling cared for and fostering a good relationship is one of the best things you can do.
However, being there for them also means knowing the most practical things about their experience such as what days they take certain medications, and being helpful with gentle reminders. This can let them know they are not alone. My family and I made a shared folder online where we keep important information such as the phone numbers of certain doctors and pharmacies. We keep the schedule up to date. Even if your loved one is in total control, knowing you have their back can be a source of comfort that eases anxiety.
Here is my caveat to this philosophy: keep the lines of communication open. Some loved ones may feel like a burden if you have alarms set for their medications. They may not like that particular strategy. In this case, tell them why it is important to you to help them and ask them what you could do instead. See where that conversation goes and just make sure that you guide it in the direction of you making sure they know they are not in this alone. You might be surprised at what you learn and what they feel is helpful.
4. Get a weekly medication organizer.
This last tip is purely practical and probably the easiest way you can show your support. Get your loved one something to track their medications. There are many options online and you can find something that adds to your loved one’s space rather than being an eyesore.
An important philosophy to keep in mind is that using a pill planner doesn’t mean it is because we forget our medications all the time. It can also mean that we need it to prevent us from taking too many medications. Taking too much of some medications might be just as bad as missing them entirely so the pill planner isn’t sending the message that someone is too irresponsible but perhaps, they are overly responsible.
Thank you for reading to the end of my post. I hope that these tips are helpful.
Do you have tips to support a loved one who was suddenly and recently diagnosed with a chronic disease?
Let us know in the comments.
Photo by Kampus Production