The stigma of living with carcinoid/NETs
Living with carcinoid/NETs is not like living with most other forms of cancer. No one hides the fact they have breast cancer since Betty Ford brought it out of the closet and into the public domain 40 years ago. And while there can be a stigma attached to lung cancer–you smoked so you have no right to complain, some think–people are usually pretty up front about it as well.
…that requires a special kind of courage…
But carcinoid/NETs patients are the homosexuals of the cancer world. They remain closeted even from their spouses and doctors because the symptoms can be so embarrassing. Few want to talk about the painful bloating and gas–and no one wants to admit to daily diarrhea–let alone the multiple episodes a day that become increasingly the rule as the disease progresses.
Living with constant diarrhea
I went through this for years with Jane. Very occasionally she would admit she’d had a diarrhea episode in the morning and taken an Imodium to settle it so she could go to work. We were very open with each other about most things, but her bathroom habits, I learned early in our marriage, were not something we were to discuss. I wonder, periodically, if I should have pressed that issue harder earlier, but I am fairly certain she would have lied to me about it. Diarrhea embarrassed her like few other things.
…carcinoid/NETs patients are the homosexuals of the cancer world.
The first year we set up this website I conceived this idea to do a series of news and feature pieces for newspapers nationally on carcinoid/NETs. We had no trouble lining up interviews with doctors, researchers, and foundations. But finding patients who were willing to talk about their experience living with the disease on the record proved very difficult. We finally did find someone, but it was very late in the game when we did and I was very much afraid we would have to do without the patient piece at one point.
Hiding the embarrassing truth
My goal when I started was to put a human face on carcinoid/NETs. My hope was to start with interviews and eventually find a patient–or ideally, several patients–who would write some of these posts about their day-to-day experience with it. I approached several people about that possibility but ultimately gave up the quest. People routinely turned me down. They told me they were too focussed on their treatment or had been given a clean bill of health or did not want to think about it any more than they already had to.
Diarrhea embarrassed her like few other things.
And I was not going to argue with them. I’d seen what Jane went through–how much focus and energy that consumed. And I had come to understand, as well, over the last year of Jane’s life, how difficult just living with this disease is. It consumes everything and leaves nothing.
Living in the subtext
But in the time since Jane’s death, as my brain has begun to emerge from the total fog of grief and guilt those last days brought on, I have begun to truly listen to what patients are saying–and not saying. Their embarrassment over diarrhea episodes is a constant subtext in what they say and write. They worry about going out in public, about what they can and can’t eat, about knowing where the bathrooms are and how quickly they can get to them.
It consumes everything and leaves nothing.
From very early in our childhoods we are programmed to believe that bladder and sphincter control are the hallmarks of civilized behavior. Uncontrolled diarrhea takes us back to the early days of our toilet training–makes us infants again who are striving for mother’s love and approval. Living with daily uncontrollable diarrhea would be, for most of us, a fate worse than death. Yet that is what many carcinoid/NETs patients face every day. It is no wonder to me that Jane hid the extent of her diarrhea even from me.
Living in the closet
It is no wonder carcinoid/NETs patients are so reluctant to talk about their disease in detail, even among themselves. Homosexuals fear they will be rejected by their parents because of whom they love. It mars many of them psychologically for years. Carcinoid/NETs patients may psychologically fear the loss of their mother’s love because they cannot control their bowels–an even greater sin, given our emphasis on toilet training as a mark of civilized behavior.
Uncontrolled diarrhea takes us back to the early days of our toilet training…
But finding the money to cure this disease means putting a human face on it. That requires a Betty Ford–and that requires a special kind of courage from a public figure that neither Steve Jobs nor Dave Thomas could muster. Or a special kind of courage from large numbers of everyday people willing to put their faces on this hideous disease, regardless of their own potential embarrassment.
