Why won't my friends just shut up and let me die?

I have a very rare disease. All the doctors know is that it's going to kill me.

Published September 29, 2006 11:09AM (EDT)

Dear Cary,

I'm an attractive, vivacious girl in my late mid-20s. A half-hour bike ride can put me in a coma. I haven't been to the gym in two years. I bring an arsenal of medications and emergency precautions when I dare to go on a mild hike with friends. I fall asleep at nightclubs because I feel so ill.

I have Type 1 diabetes, and although this isn't a particularly complex disease to manage for most people, I have an exceptionally sensitive and jumpy liver that cannot be controlled. The liver condition isn't, in and of itself, a sign of poor health. In a person without diabetes my liver would be considered exceptionally healthy. But the damned thing is going to kill me.

I was diagnosed with the diabetes in 1998. I was the model patient. All my doctors loved me.

I was in exceptionally good health until my liver freaked out. That was two years ago. And now, after two years of feeling sick all the time, spending 90 percent of my time and energy monitoring my blood sugars, and going to countless doctors and specialists and getting all sorts of conflicting advice -- peppered occasionally with "Goodness, that's peculiar. I don't know why your numbers are so unstable" -- I'm pretty much done.

I've spend thousands of my own meager dollars to try to get more data and more help for this disease than my insurance will cover, and it's all seriously come to nothing. I have a terrific endocrinologist now who has been more than generous and helpful with his time and resources. I call him sometimes upward of three times a day to review my numbers and discuss why they might have gone off track. He's available for this at any time of day, and I am not charged extra for it.

And he doesn't have an answer either.

I can't look back at how I've managed my care and say, "I made mistakes." I did not. The doctors concur. I did everything I was supposed to do. I followed the rules, and then some. I did research, kept myself under tighter control than most. I was a model patient, and I was in terrific shape until two years ago, when everything fell apart.

So. I'm dying. This is going to kill me, and since I've compromised so much of my life and youth (I'm 28) on this disease, I'm not interested in compromising anymore. I've wasted the last two years falling deeper and deeper into social anxiety because I'm so preoccupied with my health. I can't have relationships anymore because of it. I can't even have sex anymore because of it. Physically and emotionally I'm burned out. And I cannot keep fighting. It's quixotic. There's no battle. It's just the way my liver is going to behave. No, a transplant is not an option. No, they are not developing new medications. No, no, no.

So I've started telling my good friends who have been so careful and patient in listening to me complain and fuss over the numbers and medication regimens that I'm going to die.

But they all come back with the same response: Fight! You must fight! You're a fighter! Go, go, go! Rah, rah, rah! It's exhausting. Each time I've heard it I've wanted to reach through the phone, grab them by the throat and say "MotherF#$()*&#er, what do you think I've been doing!? Eating pie, and having martinis, waiting for this to resolve itself on its own?!" I'm tired. I'm tired of trying to figure out something that every doctor has said is simply beyond control. It's beyond control. There will be no more fighting. It simply cannot be controlled. This thing will kill me, and until it does I will continue to feel like crap. The only thing I can do is not drive myself nuts anymore and waste the time and money I have left trying to make sense of it. At some point you have to draw the line -- that there's nothing else to be done. Another doctor is not going to land on a miracle solution. Again: There are no other drugs. A transplant is not an option, and would not help even if it were.

I want my friends to know that I am dying. But I'm tired of explaining my disease, and right now the last thing I want to do is explain why I'm out of hope.

I realize that Type 1 diabetes is not generally a killer. My case is appallingly rare. I just don't want to have to explain myself. And explain myself. And explain myself. Because I know if I gave my friends this letter they'd still be arguing with me that I'm some sort of wimp, some sort of weakling, some sort of failure for not fighting. I know they believe they can goad me into fighting. But there's nothing to fight. I've done nothing but fight for 10 years, and all it got me was sick, tired, broke and still dying.

I have one friend who responded appropriately when I told him what was going on with me. He told me he was sad that I'd given up hope, but that since he didn't know what it was like to have such a disease, he couldn't pretend to understand how I came to my decision, and knew that I had certainly tried to have things go differently. Then we continued to have brunch, as we do every Sunday.

How can I get the rest of my friends to afford me this same dignity and respect?

What can I tell them?

Death With Less Drama, More Dignity

Dear Death With Less Drama,

You and I have corresponded since your first letter, so some background is in order.

Among other things, I wrote back to make sure I understood the disease correctly. As I now understand it, your liver "rebounds" at inappropriate times, releasing unpredictable amounts of sugar and hormones, so that the insulin you take to control your diabetes doesn't work. Also, your liver sometimes "hoards" insulin and then releases it unpredictably.

Since the condition is so rare, and does not have a clinical name, I decided to go with what you called it: "Type 1 diabetes + really annoyingly sensitive and nervous liver."

I also wrote you to let you know that I had edited your letter quite a bit for length. So readers should know that your original letter was a classic rant; it went on in glorious high dudgeon, in the spirit of somebody who has completely and utterly had it and is letting the world know. Such letters are priceless, refreshing and bracing, and I thoroughly enjoyed it. I knew that I would have to cut it, however. I just hope that I didn't completely kill the original spirit. Sometimes that happens, you know. You edit for space and you end up cutting something vital. It's like surgery.

To complicate matters further, as I was finishing up my column, you wrote with some late-breaking and potentially encouraging news. A sizable tumor has been discovered on your uterus. Normally this might not be good news. But in this case, you said, "these sorts of things will freak one's liver out and destabilize one's blood sugars, since the body thinks it's fighting something ... which causes the liver to release sugar for energy." So when surgeons remove the tumor, there is a chance that your liver may begin functioning normally again.

"So maybe this won't kill me," you wrote. "Or maybe the tumor will kill me. I don't know. But I'm holding off on any more announcements for the moment. So for now I don't have to worry about what my friends might say."

That's quite wonderful -- for you. But what about my column?

Fully aware that it would reveal just what a morally bankrupt enterprise I am engaged in, I broke the news to you as gently as I could: If you're not dying, my column doesn't work!

With what I have come to recognize as your characteristic humor, you replied, "No matter what kills me, my friends will still be annoying."

Anyway, what I was originally going to suggest was that you seize control of the conversation by telling your friends quite clearly what you are willing to talk about and what you are not willing to talk about. Simply place the whole subject of treatment options off-limits. Make it clear that you refuse to get into specifics with them.

You can refuse. You can simply refuse.

Of course, if you insist on telling them that you are dying, they will react in ways that you cannot control.

I know how people are. They say, But have you tried milk thistle? Much of it is well-meaning. And much of it is motivated by the sheer difficulty of accepting and digesting such news.

But underneath your request is, I suspect, something deeper and more general: What you really want is for your friends to listen to you and accept how you feel about this situation right now. Treatment options and your prognosis may change from day to day. What doesn't change is your emotional need for your friends.

You want them to just accept you. I think that's really what it is. You want acceptance. And in advocating that you fight, they think they are being on your side, but they really aren't. They're pushing for some idea of who they think you are supposed to be and how you are supposed to act. This makes the friendship feel a little conditional, or contingent -- at the very moment when what you need more than anything is to sense that it is unconditional. You need their unconditional emotional support more than you need their advice.

You're not saying that you want to give up and die, crawl off into a corner and stop eating or something. What you're saying, I think, is that you need to simply be heard, and for your decisions to be respected.

If all goes well, however, as we have recently learned, you won't have to tell your friends that you are dying after all -- not for a long, long time.

"I'm hoping that by the time I do have to make such an announcement again," you wrote in your most recent letter, "it'll be several decades from now, after I've invested several tens of thousands of dollars in good real estate and even better plastic surgery, and have had several ungrateful mooching children who will only serve to deplete my expansive estate, and fritter away their private school education."

I hope so too.

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