What "BAD" doctors say


(ScottT) #1

I was looking around the site and found:

“JMIAH – My Story”

Jeremy Williamson

He seems to be a member with lots of contacts.  As I was reading his "bio" (nicely done) I noted the following comment:

"They said I would have to take shots for the rest of my life and not be surprised if I found myself in and out of the hospital due to the complications from the disease."

I ask this question, "Is there ever a right time to LIE?"  I think when telling the truth would hurt that person more than not telling them would do is a justifiable time to LIE ...

When I got diabetes in '72, I had probably like most, lost weight, etc., and stayed in a hospital for about 8 days.  There I was told that "probably, if I am lucky, I would live to 35 or maybe more, but the chances were pretty good that I would die from this disease if i lived long enough."

I have never been in the hospital since then, except to birth my children.  I have friends who have died, mainly from hypo reactions, and others whose body could not make it.  I struggled for a LONG time not only being told that I had to take shots, eat no cake, and die, but that there was no cure.  No way to survive on Survival or go into the military if I wanted.

I don't think doctors should be, and maybe they aren't today, so honest to young kids.  I'm 47 and alive, doing well.  I was sure that at 35 I was going to have something happen to me - I was certain - they told me ... what could I do?

Nobody knows when you are going to die or even when you are dead (e.g., that guy in a 20 year coma recently).  Words, a single word, can scar, damage, and emotionally terminate dreams and ideas if not immediately they will in the long term. 

How many you you were told something like that when you were diagnosed?

Scott  


(kneazle_lady) #2

I was. I think it terrified my parents much more than it did me. The blindness, amputation, dialysis, and...cerebral edema...was treated (early 1980s) like a given. It was an announcement that the endocrinologist made. While my parents were terrified, I went nihilistic (sp?) about the whole thing. Sort of a "Life is meaningless effort to delay an inevitable miserable end...so why be miserable or, for that matter, feel anything at all" mentality. Maybe nihilist isn't the right word. I just did a core dump, wiped the hard drive clean, removed all previous programming related to future but pretended as though I actually believed I had one.I didn't believe I had a future. Sometimes, I still don't. It's like a shadow of a migraine; it comes and goes, and it's a memory, not the actual experience...

I think the "bad news" approach made my mother act out of fear and say things like, "You're killing yourself!" if I ate a sucker. She did the  best she could with what she had, which was more than a lot of people. She read me poetry; she shared so many things that were so wonderful with me. But saying things like that to an eight year old is not healthy or sound. The sky did not fall when I ate a silly piece of sugar candy. There were times in DKA that my own sky sagged a little, but it never actually fell. So what was the lie...was it that the sky was going to fall, and me with it or some such thing, no matter what I did or how hard I worked, or because (somehow slightly contradictory) of one mistake?

I think my family--my mother especially--and I survived the whole mentality...or we were lucky enough to outlast it...those were fourteen long, unnecessarily painful years of endo visits that were hellish. One day when I was nineteen, I stood back and said, "No. I am not going to put up with this. I don't care if this is all that I have in terms of health care. If it is this endo or nothing, I would rather have nothing."

I don't blame the endo for my bad choices, although he was an odd person in some ways that I think were beyond the scope of appropriateness for a medical setting. I don't blame anyone for my decisions. But I do strongly identify with the emotional and spiritual context described above. I wouldn't trade my endo, or my mother, or family, or anything that I have experienced for any other experience. Good or bad, experience is valuable. I can tell other people going through the same thing that they can say NO and find other health providers. I can tell my story, a lot of it based on poor perspective, and suggest that there is always hope.

I've gone on long enough. I wouldn't trade my family for anything, either. Lots of things were unhealthy, but there was also, in people like my mother, a lot of love. It just came out more often than not as fear. Anyway.


(ScottT) #3

Crochet Nut,

Thanks.  I think that news, shaped me into the traveler and "higher risk" person.  By high risk I don't mean bad things, just like to live a little closer to the edge and look for risk to replace the "certainty" of my Dr.'s remark.  I am still very careful.  But I love reasonable challenges.

Scott


(ScottT) #4

No one has more to say about this?


(akoster) #5

I wasn't told this when I was first diagnosed, but I have heard about complications and death nonstop since then. I wish people had just lied to me. I already do my best to control my levels- but mine is more difficult to manage than others (as admitted by my endo) Maybe I could live the rest of my life (even if it is short) with more emotional stability if I didn't believe that I was slowly killing myself with every high level.