The Importance of Sharing Your Lung Cancer Diagnosis
Lung cancer comes with a heavy stigma. Just mentioning the name seems like a burden to many. The urge to keep it secret is understandable. No patient undergoing treatment for this disease needs to deal with the judgment, much less the odd looks or misguided sympathy that comes from a presumption that the patient might as well already be dead. But keeping the diagnosis secret is potentially detrimental -- and it prevents a handful of positive things from happening.
Secret diagnosis dangers and setbacks
Cancer does not occur in a bubble. The patient may feel that this is a solitary battle to be waged in the dark, but the truth is much broader. Not only does it take a network of healthcare professionals to treat lung cancer effectively, regardless of the stage, but the effects of treatment will invariably touch the patient's personal and professional lives. Keeping something like this secret can negatively impact relationships, especially those that rely on trust.
Certainly, there may be reasons to keep the information private in specific situations, and this can be a very personal decision. But knowing that it may be exceedingly difficult to maintain the "normal" lifestyle a patient was accustomed to and that medications will likely have an effect on mood and temperament, it may be prudent to share at least some information with those whom the patient interacts with regularly.
Maintaining a secret diagnosis may make healthcare communications difficult, especially if there is no one to back up the patient during intense treatment cycles. Chemo brain, for instance, can be a very real and difficult issue. But having even a small support system in place can help to make up for difficulties as they arise.
Open up to remove the stigma
Opening up about a diagnosis enables the emergence of hidden support systems. It also has the very powerful effect of beginning to change the outdated narrative and help remove the stigma.
Lung cancer patients often feel that they are subject to victim blaming. This, in turn, prevents them from speaking out about their disease and, in extreme cases, may even prevent them from seeking appropriate medical help. But the fact is that lung cancer can -- and does -- strike somewhat indiscriminately. It turns out that the biggest risk factor involved is simply having lungs. The more that lung cancer is humanized, the harder it is for labels to stick.
Up until the late 1980s, breast cancer was almost never spoken about in public. It had been treated as an almost shameful disease and patients often were secluded. The diagnosis was a virtual death sentence -- much the way that lung cancer is perceived now. But all of that changed when a few brave women realized that only through raised awareness would the plight of breast cancer patients change. Today, not only do the vast majority of breast cancer patients outlive their disease, but many are actually cured of it. It took some marketing savvy to overcome the public inertia and get people talking, but once that happened the change was rapid. Funding for breast cancer research increased exponentially, but it was the growing awareness that immediately began saving lives.
It's time for lungs
In the evolution of cancer awareness, it is time for lungs to take the front seat. Adding more voices -- and more faces -- makes the importance of greater awareness and research funding harder to ignore. The average of 433 lung cancer deaths each day would drop considerably with better early detection. And that increased funding only happens through direct lobbying, where the number of people involved translates directly to the number of additional dollars raised. When patients and caregivers are talking about their experiences daily and sharing them publicly, those experiences become part of the public dialogue and soon the outdated stigmas will dissipate.
But before that, the most surprising side-effect of sharing occurs. Patients and caregivers alike find, in spite of some losses that will inevitably occur, new relationships blossom. Support systems fall into place, with shared stories and new camaraderie. Patients who were quiet because of fear suddenly have reason to hope. Caregivers who felt alone and overwhelmed realize that they have others to fall back on. The act of sharing can be powerful and transformative, not only for the patient, but in some small way, for the world.
Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.
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