At this moment in the world’s long and troubled history, the coronavirus pandemic is burning its way across the globe. It is upending virtually every aspect of our daily lives and calling into question everything we had believed to be certain and secure about our world. It is leaving no life untouched.
And it is teaching us rough lessons about how precious our own health and that of those we hold dear truly is. It is teaching us of the beauty and the fragility of life. It is teaching us of our own frailty, the limitations of our own power, no matter how much money we have or how many degrees we possess.
But your life and loved ones don’t have to be impacted by this novel pathogen to understand these profound life lessons. If you are experiencing the diagnosis of a loved one, no matter what that diagnosis may be, then you know what it is to feel fear, to feel loneliness, to feel uncertainty. You know what it is to bear the weight of these feelings, even as you strive to be the rock of support and strength for your loved one and your family.
This article will provide strategies you can use to help you cope. These techniques are designed to help you nurture and restore your mind, body, and spirit, as you lead your family and guide your loved one through the battle ahead.
Know that the World Has Changed
One of the most unexpected and difficult aspects of dealing with the diagnosis of a loved one is the recognition that your family’s life is fundamentally different now. And it’s far more than just the illness that is different.
The world you live in, the world as you know it, is going to be different. Very different. That’s because our society, its structures, the way it functions, is built to value health, not illness. There are different expectations for those who are contending with chronic illness or impairments.
Unfortunately, a lot of those expectations, you’ll find, are simply not fair. Your loved one, for instance, is probably going to be required to prove her sickness or her pain, just to get the care they need. Pain relief may be withheld or financial assistance may be denied unless and until your loved one has met some validation standard far beyond your control. The process can be long, arduous, ambiguous, and degrading.
And what that means is that you may well find yourself in the role of advocate and even antagonist. You may find yourself clashing with virtual strangers. You may find yourself fighting against a system that you can’t see and probably won’t completely understand, a system in which your loved one is treated more like a case number than the person you hold dear.
And these points apply not just to physical illnesses, but also to psychiatric and behavioral diagnoses as well. In fact, patients with these conditions may have an even harder time accessing the resources and invoking the protections they deserve.
For example, patients who have received an ADD or ADHD diagnosis may require particular accommodations in schools and workplaces. These are protections to which they are entitled by law, and yet these rights are often denied because of a pervasive lack of understanding about these disorders.
That means that you may well find yourself in the position of educator and attorney. To help your loved one, you may find yourself becoming an expert in legal and medical research.
Not a One-Shot Deal
When you are coping with the diagnosis of a loved one, it’s important to realize the illness is not an isolated thing. It feeds into and is fed by everything in the patient’s life — and that means it feeds into and is fed by everything in your life.
We call it the total load, and it refers to all the social, familial, emotional, and physical factors that impact the illness. One of the most significant of these factors, not surprisingly, is stress.
Stress is not only physically and emotionally distressing in the moment. Rather, the harmful effects of chronic stress last far longer and extend far deeper than you might imagine. The NIH has found, for instance, that stress can significantly compromise the immune system — the last thing you want when your loved one is facing a medical issue.
What this means is that coping with an illness requires extreme and holistic self-care, not only for the patient, but also for the caregiver. Working to create a calm, orderly, and safe home environment is going to reduce your loved one’s stress, helping them to be stronger in their fight against their illness.
But that’s not all. It’s also going to help you as you confront the fears and anxieties of caregiving. When you are practicing self-care, you are not only going to be a more effective caregiver, but you’re also going to set an example for your loved one.
And, you’re also going to give them one less thing to worry about. If you are good, then your loved one can focus on getting good, too.
Protecting Yourself to Protect Your Loved One
As we’ve seen, caring for your loved one means caring for yourself. That includes managing your stress and attending to your own emotional and mental health needs. It also means being mindful of your physical health as well.
When you are a caregiver, for example, your loved ones may need assistance with bathing and toileting. They may need assistance in cleaning and dressing pressure wounds or surgical incisions. For your own safety and that of your loved one, meticulous hygiene, including rigorous handwashing and hand sanitizing, is imperative.
Coping with the diagnosis of a loved one means entering a world you hoped never to inhabit. It means suddenly being thrust into the role of political activist, medical expert, and legal advocate simultaneously. Above all, it means learning to take care of yourself, so that you can take care of your loved one.
Image courtesy of Erfan Moradi.