Re: The social stigma of cirrhosis

[Guest guest]

I would like to chime in if I could. Even though I don't have

cirrhosis and was a caregiver for my wife who died from the disease. I

still have to deal with the stigma as well. When people ask how she

died I just say from Liver Disease. But most won't leave it at that

and they usually follow up with " she was so young! (31) How did she

get liver disease? " This may be an innocent enough question, but for

me it's a little difficult. I don't want people to remember her for

her disease. I want them to remember her, for her.

At the same time, I don't want to shrug it off. I want people to be

aware of how serious the disease is. Some, if not most,try to put it

in this neat little package and label it. Then look at it as if it is

the individuals fault. They're alcoholics, drug users etc. Many even

think everyone with non alcoholic cirrhosis get liver transplants and

it's only the drinkers that don't. I think most people want to label

it so they don't have to deal with it at any other level. " I'll never

get that because I don't drink " etc.

So, except for friends and family who are close to me and my wife and

those here who I know give support, I don't go into real detail about

how or why she got it but instead how she dealt with it and how strong

she was.

So I guess my point is, it's not only those who have the disease that

deal with this issue it's the caregivers as well.

MaC

>

> wrote,

> Even if people did the wrong things a few times,

> I don't wish anything like this on them.

>

> , I feel badly for you feeling the need to explain your cirrhosis

> didn't come from alcohol. But wouldn't it be great if it didn't

matter. I

> liken it to AIDS and some people's feeling they have to explain

they're not

> homosexual. It shouldn't matter.

>

> Hep and AIDS are caused by viruses, no respecters of persons, social

class

> or wealth. Cirrhosis has many causes. I can assure you that if my DH had

> drunk a gallon of whiskey per day for 6 decades (he didn't -- for

what it's

> worth he was diagnosed at age 40, and while he was a drinker, we've sure

> seen people who drank more) he NEVER did ANYTHING to " deserve "

cirrhosis.

>

> I'm saddened that those who have to deal with cirrhosis also have to

deal

> with the social stigma.

>

> And, , don't stop posting. We're here for you and sad about your

> situation, but we sure don't want you to " be quiet " !!

>

> Dorothy

>

[Guest guest]

Good points, Mac. As a fellow-caregiver, yes, I, too, get sucked into the

questions and stigma about the cause of 's problems. Isn't it nice and

neat, as you say, if we can blame the sick person and thereby assure

ourselves we're immune from the problem.

One issue we are still dealing with is that we believe 's liver

problems were caused at least in large part, by exposure to plutonium when

he performed some testing on the electrical system in a building at Los

Alamos National Lab where a spills had occurred. When the first GI doctor

asked if had ever been a drinker, and he described his drinking

pattern (heavy-ish, but ordinarily not heavy enough to cause cirrhosis in a

man of 40), she labeled him as an alcoholic. She offered to send him to

rehab and he refused, so he's labeled as an alcoholic in denial. It was like

nailing shut the mind of every doctor he's seen since. They've been

unwilling to explore other possible causes, even though a test that is very

modest in cost could settle the question. [incidentally, since his first

hospitalization in March 2005, has not had a drink. He quit, on his

own, immediately. Whether alcohol caused his cirrhosis or not, he can't

drink -- his liver can't take it.]

This same GI doctor, when mentioned the plutonium, stated immediately

and with great assurance, " Radioactive poisoning doesn't affect the liver. "

We've since learned that plutonium deposits in (drum roll please) the long

bones and the liver!

So, to elaborate on this discussion, the stigma is not " just " a social

one -- it can actually impede proper diagnosis.

Dorothy