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I was raised in an OA, but for some reason - my bmom has always been very resistant to offer me any information related to my medical history. It's been a frustration for me for a very long time, as I visit Dr.'s who are forced to run expensive and sometimes painful tests to rule out things that would follow a genetic footprint.
It seems that every time I am faced with something, I contact my bmom and she initially claims there is 'no medical history to pass on' (I've heard this a lot from her, but thru other, non-medical-history-related conversations, I have picked up on several 'important issues' which she has never outright told me about). At any rate - I have a very limited medical history (and I realize this isn't just an 'adoption' issue - some biological families also have limited medical history).
At any rate, about six weeks ago, I became ill. Not in-bed-unable-to-function ill - just run down, fever, nasty feeling. I had committed to going to Texas to care for my parents for a few weeks, so I tried hard to put it behind me and made an appointment to see the Dr. as soon as I returned.
Things slowly went down hill, health-wise. I was feeling so bad, by the time I made it to the Dr., that I wasn't sleeping at all and I had almost zero energy.
Initial testing indicated Cancer and it scared me to death. If I thought I'd slept very little before, I slept even less after that.
Then, last night, after a whole freakin ton of tests, MRI's etc - the Dr. called to tell me that I did NOT have cancer (Thank GOD!) but that I had a Genetic disorder that caused me to retain excessive amounts of Copper in my liver - my liver was functioning, but not as it should and I had to make some serious dietary changes + take some pills to flush the Copper out and then, continue these lifestyle/diet changes for the rest of my life. Easy enough.
So, this leads me to my question:
This is a genetic disorder - passed on to children of parents who are both carriers. It’s possible that my bmom may not even know she is a carrier and I am not her only child. However, her other child and I do not share a father. He is older than I am and I believe he has a child, but I don’t know.
As she has been so forthcoming with information...I wonder what my obligation is to her in sharing this. She is well beyond child bearing years – and even so, this woman with no medical history to pass on, had a radical hysterectomy at age 23, due to thyroid/tumor issues (this is one of those things that came up in conversation, but has never been officially give to me as medical history…and when I asked about it once, I was told it was “nothing”)
Part of me feels obligated to tell her – but the other part of me is so freakin frustrated by her unwillingness to be of any help to me, I could care less.
Ok – let it fly. Tell me how stupid I’m being. Right now, I admit, I feel TOTALLY selfish. Totally. If I did tell her, it wouldn’t be until I’m in a better place anyway…but right now, I need to hear what others think.
I just keep coming back to the “no medical history to speak of” attitude she has…and wonder if she’ll even care.
I am interested in hearing from EVERYONE!
Adoptive mom's
Birth mom's
Adoptee's
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Brandy;First of all, I'm glad you don't have cancer. That did make my morning. Totally.Secondly, as you typed through your internal battle, I think you know that something needs to be said to her. Are you obligated, meaning forced, to do so? No. Is there a moral obligation despite her previous resistance and, as such, disrespect. Well, yes. Maybe not for her but more for your brother's kid. Will your Mom tell him? I don't know. But once she knows the news, it's up to HER to follow through with it. You will have done YOUR job.*hugs* I don't envy you right now.
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Glad you're ok!
I guess you should let them know because thinking how awful you felt last week I guess it's not right to let another person suffer if it can be avoided, and Livers are a pretty big deal.
I'd probably send a one line note or email. Just the facts. I don't even think you have to do it as a "family obligation" thing, more just like a humane thing (if that makes sense).
Brandy, sorry you have been feeling so bad. Glad to hear that it is not "C" (I hate even thinking about that). I know it's obviously up to you, but I think even asking means that you know you probably "should." My dad is dying of liver disease (not this same condition) but it is obviously very "inheritable" and oddly the liver is something that is very resilient so it may really be something that if caught early would be helpful. Hope you are feeling better soon.
Brandy I've gone through similar, serious health issues over the years. My firstmom's side is totally open, however my bio-father is exactly how your firstmom is.
If it was me, I would tell her. She might not care? I don't think my bio-father would. It's up to you though, I don't think anyone would think your some horrible person if you didn't tell her.
Brandy, Glad you finally know what is causing your problem and that it isn't cancer...but it is something you will have to deal with for the rest of your life and you should have been warned if indeed your family has ever received a dx. I found out that I had a 'probably genetic' rare disease after my heart attack and stroke...I also found out that it is probably the reason my son passed away at age 5 weeks from so called "SIDS". My adoption study shows zip, zero, nothing... The courts opened my records due to: a) obvious need to know what else may be in the cards for me, b) to tell my birth family of my dx so it could be in their medical files. My sheer panic that my family was at risk too was what finally made me have the courage to search actively. Brandy, I know that I am 'preaching to the converted' but others will read the post so just want to stand on my soap box for a bit. People must communciate both ways when it comes to medical history. We have the same responsibilities to provide details to our birth families as they do to us. Medical history does not stay static, it is fluid and expanding as time goes by and must be up-to-date. If your dx can save any member of your birth family from going through what you have just gone through then the knowledge you pass on is priceless. I still cannot understand why people are hesitant about giving detailed medical history to their family in today's world of medical science. I think that it goes back to the time when society deemed people were cursed if they were sick and sent away. If you look at recent history regarding lepers (yes, it is still a disease today in North America), their entire family worked to ensure the one inflicted was hidden away, not spoken of, or said to be off living elsewhere, all to ensure the family was not shunned by society (do you see a correlation with how birth mothers were treated in the closed era?). In our lifetime many afflicted with leprosy were kept from receiving new medical therapy by their families so that the family name was protected, all done through ignorance of how far medical science had come. I went for my yearly mamogram this week and they always ask about family history/update and for the first time when they asked if I have breast cancer in my family I was able to say 3rd degree relative (only half a family history but better than none). It was so strange to be able to answer with relevant info, the feeling stayed in my soul all day. Kind regards,Dickons
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Hi Brandy...Thank Goodness your news is better than you originally thought; I hope you feel better soon. I am on the other side of the coin in that I provided my medical history and frequent updates to the adoption agency to be passed on to my daughter but since her A-mom refused to admit she was adopted it never was. Even at the tender age of 17 I was very aware of the need for her to have this and it makes me angry to know her Mom wasn't just as concerned. At this point I have 19 family members with type II diabetes and my daughter has yet to be tested. When I shared this with her Mom after reunion her comment was "Well none of us have it or any of those diseases so I don't think it's a problem." HUH??? Are you kidding me? All I can say is I've done my part. I knew you'd do the right thing too and even if nothing ever changes you'll rest easier having done that. Take care and get the rest you need....and please, VENT AWAY!!!:hissy: Tracy
I'm sorry your bmom will not be more forthcoming with regard to medical history. I wonder if denial is in play here?
My guess would be denial or fear, maybe also embarrassment?? This doesn't excuse withholding it, of course, but those could be possible reasons. A lot of people don't want to think about diseases and medical history. Some illnesses are more difficult to talk about, as well, especially things like alcoholism or mental illness, which typically are kept deeply hidden for fear of being stigmatized.
Have you sat your bmom down and told her point blank that you must have this information? I wouldn't accept "I'm running late, will share later." Could you email her back and say you want to set up a specific date and time to discuss this matter in person?
I still cannot understand why people are hesitant about giving detailed medical history to their family in today's world of medical science.
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