The Real Work of Living a Full Life When Illness Moves In and Refuses to Leave
No one ever requests it. No single person has ever willingly accepted a serious illness diagnosis. Serious illnesses come without advance notice. Without your permission. Without explanation. You go to bed as you. You wake as you. But in between sleep and awake, you receive a diagnosis that will forever alter everything.
I have experienced the arrival of that diagnosis in two distinctly different roles. As a Trauma Surgeon, I sat across the table from my patients while the diagnoses arrived. While they received the devastating news and their entire perception of self changed in an instant. And later, when the diagnoses arrived for me in unexpected ways I was sitting on the opposite side of the table. I was no longer standing behind my patients delivering bad news. I was receiving the exact same message that I had provided so many times before. What I learned from both experiences is that the diagnosis is real. The fear that comes with it is real. The loss associated with it is real. And so is the life that remains after the diagnosis.
Let me state this clearly, because it’s important: I am not telling you anything about how things work out for everyone; I am not suggesting you should “stay positive” or “fight like a warrior” or “love the journey.” There are good intentions behind these phrases, but they can create feelings of guilt in addition to making an already difficult situation even heavier. You do not have to be relentlessly optimistic. What I am saying is something much quieter and perhaps more accurate.
You are a person with a disease. You are not the disease itself.
There is simplicity to this statement. However, it is not easy to make it a reality. Serious, potentially life threatening illnesses invade nearly every aspect of daily life. The seriousness of your illness can change virtually every detail of how you plan your days, schedule appointments, interact with others, and define yourself. The temptation — and I completely understand why — is to allow the diagnosis to define you entirely. This means allowing the diagnosis to be all there is. Stopping being Ron or Maria or David, and instead becoming “the cancer patient”, “Parkinson’s patient,” or “person with heart failure”. The disease shrinks the frame until that is all you can see.
However, you were someone before this happened to you. You are still that person today. You have a past. People who care about you. Things that make you laugh. Things that hurt you. The disease came into your home — yes — but it does not own your home.
I continue to be inspired by individuals who are able to find a way to live despite having their lives invaded by illness. An example of this would be an elderly woman undergoing chemo therapy. She attended her monthly book club meetings. For those two hours she talked about something other than her health and realized that the fact that she existed was evidence that she still exists. Another example would be a man with advanced Parkinson’s who continued to cook Sunday dinners for his family. His ability to cook was limited by his shaking hands, but he was determined to maintain the tradition and be involved in the preparation of meals for his family. He was aware that his abilities had diminished since his illness began, but he still wanted to be involved in activities he enjoyed as long as possible.
They were not ignoring the seriousness of their diseases. They were choosing to focus on aspects of their lives that made their existence meaningful beyond their illnesses. Community can provide support in these situations in ways that are hard to overestimate. The difference between community as a concept and community as actual people cannot be overstated. For example, when your neighbor delivers groceries to your door without being asked for help, when a friend sits with you in silence because they understand that right now you don’t need words but rather their physical presence, when someone in your support group expresses exactly what you’ve been thinking/feeling but could not verbalize, and suddenly you’re less alone in this world — these are not insignificant events; these are often what keeps people connected to life.
Similarly, family members can provide support (and again, I use this term carefully) — because family can be complex and sometimes family will arrive wonderfully, and sometimes family will arrive at all. But regardless of whether family provides unconditional love — either in a partner, spouse, brother, sister, parent, or lifelong best friend of thirty years — such love is medicine (not a cure). It won’t rid you of your illness, but it will make the weight of your illness easier to bear. Unconditional love from family will remind you that you are loved — not for what you can accomplish or contribute or be, but simply for existing.
Also, regarding seeking help — I want to mention this because seeking help is frequently among the hardest things we can imagine doing. We were once capable and independent individuals. We managed our affairs. Now we need help, and it feels like giving up control. It isn’t.
Asking for help requires courage. Asking for help is also an act of generosity — because it allows the people who care about you to express the helplessness they feel when you struggle with an illness. Allow them to prepare dinner for you. Allow them to transport you to doctor visits. Sit with them while they watch TV or read a book. At worst, you’ll lose little; at best, you’ll gain more than you may realize.
Your medical professionals matter as well — including your primary physicians, your nurses, your therapists, your counselors. Medical professionals serve more than providing treatment — the best ones are witnesses to your experience; they see what you’re carrying. Do not minimize your struggles when discussing your symptoms with them; share with them the entirety of what you’re experiencing — both physically and emotionally.
A fulfilling life is not necessarily a pain-free life — it never was.
I reflect upon this thought quite often. Prior to my own experiences with chronic illness I assumed a good life consisted of an unobstructed life – a life where the body worked well, where plans were accomplished, and where capabilities remained intact. I was mistaken.
The people I have met who lived most completely were not free of obstacles — they found meaning within those challenges. They discovered — sometimes unexpectedly — that severe illness stripped away everything false and left something much more fundamental. Their relationships grew deeper. Their priorities became clearer. Even seemingly minor joys – a fine cup of coffee, an afternoon of sunshine, an honest conversation — became significant events.
Nothing about this occurs naturally; it involves time, grief, potential professional assistance and an acknowledgment that life must be broken down into smaller components than previously experienced — one day at a time, one appointment at a time, one morning at a time, one conversation at a time. That is not weakness; that is wisdom born from necessity and it is sufficient.
Therefore, here is what I hope to leave with you — you did not invite this disease into your life. It invited itself into your life against your will. That is an undeniable injustice. You are permitted to mourn what it has taken from you. You are permitted to fear what lies ahead. You are permitted to be angry about what has occurred thus far. All of those emotions are valid expressions of humanity.
And yet — you remain here; still yourself; still capable of forming connections; still capable of finding significance; still capable of appreciating moments which count.
The disease will certainly be a part of your story moving forward. But it will not be the sole component of your narrative.
You get to continue writing your story — if this essay reached you, please consider passing this essay on to someone who may benefit from reading its words — reminding them that they are not alone — and they remain fundamentally themselves.
