Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, February 6, 2009

Parental Illness Effect on Children

Dani and I are currently searching for research studies regarding how parental illness affects children. It’s irritating to us that everything we have found we need to pay for.
However, it’s worse that the one study we found is from the 1950s.
To add insult to injury, that ONE study isn’t even about chronically ill parents or parents suffering from acute, possibly life threatening illness, but only from psychiatric disorders.
Here is what we found:
“Almost six decades ago Michael Rutter highlighted risks to the development of children of parents with a psychiatric disorder. Since then a good deal of research has been focused on these children and their parents. . . much remains to be done both in policy terms and in the development of evidence based interventions.
Several common psychiatric disorders—including depression, anxiety, and eating disorders—affect adults of child rearing age. These disorders have been shown notably to impair social and psychological functioning, leading to difficulties in work and family life.4 In recent years recognition has increased of the potential impact that parental psychiatric disorder can have on a child. Several aspects of children's development can be affected.”
We’re sure this was astounding and a huge breakthrough in research. . . . .in the 1950s; however, times have changed.
We’re getting a lot of information about how stressed out parents have sicker children or how parents without sick days from work have difficulties with caring for their kids during childhood illness, but not a damn thing about us.
Not a thing about how parents can intervene and make the lives of their children easier when they are undergoing serious medical care, such as transplantation, like Dani and I.
We are raging mad.
I’ve looked at ALL the cancer books I could find for Xander, and you know what, most of them suck.
X and I wrote our own together, specifically to attend to him.
But what about the families that can’t do this? What about those kids with parents without the education, the patience, the support, or the finances to facilitate conversations?
How about the ramifications even if you have a grade A parent that just happens to be sick?
What about the possibility of Child survivor guilt? By nature, kids are narcissistic. They “magically think” that everything that happens is in connection with them. X follows me everywhere when I have an appointment, dutifully never leaving my side, until he has seen me be treated and leaving safely.
He thinks if he is just present he can prevent bad things from happening.
What a lot of pressure on a little guy.
I can’t be in his sight every moment, but he sure does try, and the anxiety he exhibits when I “disappear” and thereby could possibly be in harm’s way is as severe as any adult anxiety attack I have ever seen.
But he can’t keep me safe just by watching. Adults know this. Children don’t.
Children are also inherently narcissistic. Everything is about them, because of them, or related to them.
It is normal childhood progression and maturation to go through a narcissistic period and learn to advance beyond this mentality (Yes, some people never do. I like to call them “emotionally stunted.”) In X’s mind, he’s caused all this bad, everything that has happened to me is in direct relation to him, and he needs to be approached in a manner that takes his age appropriate mentality into account and intervene based on the possible future repercussions of the present’s events.
However, this is never going to happen if nobody researches the effect of parental illness on children.
Why was the only study I could find over 60 years old?!
Sixty years ago having a man or woman in their 20s or 30s with a chronic, life threatening disease was very rare. This was for many reasons, the medical advances didn’t exist that allow the sick like us to have a family and survive to raise them. The option was not there.
Cancers were not as prevalent in the 1950s. There are 8,000 Hodgkin’s patients diagnosed annually in the United States, that’s still a low number, but in the 1950s a Hodgkin’s diagnosis was extremely rare. One doctor with 35+ years experience told me a story about how when he was a resident there was a 31 year old woman with breast cancer and all the residents, fellows, attending, and oncologists were scrambling to understand her.
You just didn’t get cancer at 23 years old back then.
If you were a diabetic in the 1950s, you probably didn’t have children. The modern medicine to facilitate a safe birth was not present.
This is just another example of how research and science in America is not keeping pace with social and health trends.
Researchers, scientists, everybody, where are you to help us?

1 comment:

Life Critical Illness said...

People are definitely aware of cancer but they still choose not to think about it too much. I think it must be down to fear. I speak to people about critical illness insurance every day and most people prefer bot to talk about it. Your article mentions the effects on children. Even when asked, parents still don't want to think about cancer so children don't really stand a chance of being helped or understood if this is the case.