Managing a stigmatized illness- plot twist it's hereditary cancer.
December 11, 2015 3:10 PM Subscribe
A parent of mine was diagnosed with a hereditary cancer when I was a kid. I was forced to go through a lot of not exactly consenting invasive and embarrassing procedures as a consequence. I went on to have surgeries as an adult and all went quite well physically. We've had kids and one of them has recently been genetically tested as also having the gene.
The parent I inherited this from is now dead. I'm an orphan now. All their family who also inherited are dead. They don't live much past mid sixties, even with excellent health care.
I've just been given the news that my condition has progressed in to the - getting serious stage. I'm not riddled with cancer, I probably don't have cancer now, but the stats are that I will get it 100% without treatment. And probably even with. And that the surgery I would have next kills about 1 in 3. It killed my parent. The surgery, not the condition. I guess I hadn't really googled too much about the condition as I thought I knew enough about it. It turns out I had my head in the sand and my life expectancy is statistically very very significantly lower than other people and - my kid has it.
Although we have excellent health insurance and that is not a concern for medical, it's useless for counselling. Which I've had some from the genetic people at our local pediatric hospital. Of course, I would normally discuss this loudly and proudly with all my friends and moan and cry and wail. But if I discuss it, I disclose the 1 in 2 chance that one of my children has it. And as one of my children do, and we don't want to frighten the hell out of our kid or disclose kids personal medical situation without kid's consent- I feel isolate, alone and terrified.
I'm a talker and I can't talk. I need to make up reasonable excuses around what I'm doing that make me not 100% well after maintenance procedures. I can't find much online support around my specific condition but I've lived with it since I was a kid so I don't have similar needs to newly diagnosed people.
My questions are around- what are some great stock excuses that don't raise eyebrows? There are some people I am happy to know I have a medical issue, but I don't want them to guess what it is and I don't want them to feel awkward and uncomfortable. But I also need scripts for people I don't want to say anything to. And for people I need to let know when some stuff is going wrong, but not what it pertains to... all those levels of conversations one has with different friends. And school teachers. And siblings.
And lastly, I could really do with advice on dealing with a stigmatized issue that you can't talk about because it affects other people's confidentiality. It doesn't have to be cancer related. Basically just stuff you can't talk about for whatever reason.
I could really do with a hug too. Yesterday was a crapfest of bad news and appearing bright and cheerful in front of our friends and kid is killing me. I'm now terrified I'm going to die. And kid will see it. And that kid will die before kid should.
I have a sock gmail account, no time to create a sock puppet ask account. Too teary. Email me if you'd like to be anonymous with me.
footmittennarrative@gmail.com
The parent I inherited this from is now dead. I'm an orphan now. All their family who also inherited are dead. They don't live much past mid sixties, even with excellent health care.
I've just been given the news that my condition has progressed in to the - getting serious stage. I'm not riddled with cancer, I probably don't have cancer now, but the stats are that I will get it 100% without treatment. And probably even with. And that the surgery I would have next kills about 1 in 3. It killed my parent. The surgery, not the condition. I guess I hadn't really googled too much about the condition as I thought I knew enough about it. It turns out I had my head in the sand and my life expectancy is statistically very very significantly lower than other people and - my kid has it.
Although we have excellent health insurance and that is not a concern for medical, it's useless for counselling. Which I've had some from the genetic people at our local pediatric hospital. Of course, I would normally discuss this loudly and proudly with all my friends and moan and cry and wail. But if I discuss it, I disclose the 1 in 2 chance that one of my children has it. And as one of my children do, and we don't want to frighten the hell out of our kid or disclose kids personal medical situation without kid's consent- I feel isolate, alone and terrified.
I'm a talker and I can't talk. I need to make up reasonable excuses around what I'm doing that make me not 100% well after maintenance procedures. I can't find much online support around my specific condition but I've lived with it since I was a kid so I don't have similar needs to newly diagnosed people.
My questions are around- what are some great stock excuses that don't raise eyebrows? There are some people I am happy to know I have a medical issue, but I don't want them to guess what it is and I don't want them to feel awkward and uncomfortable. But I also need scripts for people I don't want to say anything to. And for people I need to let know when some stuff is going wrong, but not what it pertains to... all those levels of conversations one has with different friends. And school teachers. And siblings.
And lastly, I could really do with advice on dealing with a stigmatized issue that you can't talk about because it affects other people's confidentiality. It doesn't have to be cancer related. Basically just stuff you can't talk about for whatever reason.
I could really do with a hug too. Yesterday was a crapfest of bad news and appearing bright and cheerful in front of our friends and kid is killing me. I'm now terrified I'm going to die. And kid will see it. And that kid will die before kid should.
I have a sock gmail account, no time to create a sock puppet ask account. Too teary. Email me if you'd like to be anonymous with me.
footmittennarrative@gmail.com
christ. you have my sympathies (and hugs if you want).
is it any help to know that your parents must have similarly faced this? are you still in contact with anyone they might have known at the time you were tested? an aunt or uncle? maybe you could ask them if they remember what your parents did / said / felt? obviously it's a different time, and you're different people, but you might learn something.
related to that - what you are facing isn't new. any surviving family (i'm understanding it's 50% chance of inheritance) must know about this. must at the least suspect it, if they think about it. i guess i am kind of echoing kelseyq and saying maybe there are places where you can talk about this...?
when i was diagnosed with (not as bad) chronic illness, i was terrified too. for what it's worth, it passes. i was told people get used to anything in a year or so. that year sucks, though. sorry. in retrospect i should probably have got some meds for depression. you might bear that in mind. also, there are support groups and mailing lists and facebook groups and all that jazz... (tbh i find them terrifying, but i am not a talker...)
more hugs.
posted by andrewcooke at 3:35 PM on December 11, 2015
is it any help to know that your parents must have similarly faced this? are you still in contact with anyone they might have known at the time you were tested? an aunt or uncle? maybe you could ask them if they remember what your parents did / said / felt? obviously it's a different time, and you're different people, but you might learn something.
related to that - what you are facing isn't new. any surviving family (i'm understanding it's 50% chance of inheritance) must know about this. must at the least suspect it, if they think about it. i guess i am kind of echoing kelseyq and saying maybe there are places where you can talk about this...?
when i was diagnosed with (not as bad) chronic illness, i was terrified too. for what it's worth, it passes. i was told people get used to anything in a year or so. that year sucks, though. sorry. in retrospect i should probably have got some meds for depression. you might bear that in mind. also, there are support groups and mailing lists and facebook groups and all that jazz... (tbh i find them terrifying, but i am not a talker...)
more hugs.
posted by andrewcooke at 3:35 PM on December 11, 2015
1. Get yourself to a psychiatrist and talk about antidepressants ASAP. I was recently diagnosed with an extremely rare form of cancer with an extremely poor prognosis. I was having panic attacks about it multiple times a day. None of the facts about my health situation have changed, but my ability to deal with it has been so much better once I got on the right antidepressant. (The first one gave me suicidal thoughts, so watch out for that.)
2. Think of all the improvements in medicine since your parent had their surgery. There still might not be a cure, but chances are the treatments have improved by leaps and bounds. They will improve even more by the time your child has to deal with this.
3. Ask your doctors office if they have a therapist that patients have had good experiences with. If they don't, call around and find one. I'm seeing a therapist who works with me for free and got recommended to her by my oncologist.
4. Find an online support group for people with your kind of cancer. I found a Facebook group for fellow appendix cancer sufferers and it lets me talk to others with my condition. You're so wrapped up in the secrecy of it all that you didn't even tell us what you have when your question was anonymous. I'd also reconsider your ban on talking about this with your close friends. I know I wouldn't be able to function without being able to cry to mine. Choose a couple that you really trust and tell them what part of the information they are not allowed to share. (I.e., they can say "she's going through some really tough health stuff" but not "she has X type of cancer.")
Hugs to you. A year ago I never would have thought this would be my life. But I'm dealing with it much better than I was originally and you will too.
posted by MsMolly at 3:42 PM on December 11, 2015 [8 favorites]
2. Think of all the improvements in medicine since your parent had their surgery. There still might not be a cure, but chances are the treatments have improved by leaps and bounds. They will improve even more by the time your child has to deal with this.
3. Ask your doctors office if they have a therapist that patients have had good experiences with. If they don't, call around and find one. I'm seeing a therapist who works with me for free and got recommended to her by my oncologist.
4. Find an online support group for people with your kind of cancer. I found a Facebook group for fellow appendix cancer sufferers and it lets me talk to others with my condition. You're so wrapped up in the secrecy of it all that you didn't even tell us what you have when your question was anonymous. I'd also reconsider your ban on talking about this with your close friends. I know I wouldn't be able to function without being able to cry to mine. Choose a couple that you really trust and tell them what part of the information they are not allowed to share. (I.e., they can say "she's going through some really tough health stuff" but not "she has X type of cancer.")
Hugs to you. A year ago I never would have thought this would be my life. But I'm dealing with it much better than I was originally and you will too.
posted by MsMolly at 3:42 PM on December 11, 2015 [8 favorites]
Your child will not have your childhood. My kid got a very different test result recently that matched one of mine early on, and I freaked out thinking how miserable I had been, and my therapist reminded me I could make different parenting choices and she was a different person than me.
The way they handle children at hospitals and with illnesses now is so different and better, and your child has decades of research and support -the internet alone means you have a huge possibility of finding a network of people with the same condition to talk to instead of being alone like you and your family were- and you can make a different childhood for your child. You already have.
Get a great family therapist and get your own if you need someone to talk to for the first few months.
You haven't harmed or hurt your children, you've protected them and given them the gift of a safe and secure childhood and now you have to figure out how to guide them through one of the first big tragedies of their lives. I'm so sorry it's earlier and harder and bigger than it should be - but just by the questions you're asking, about your kids? You are brave and loving enough.
posted by dorothyisunderwood at 5:22 PM on December 11, 2015 [6 favorites]
The way they handle children at hospitals and with illnesses now is so different and better, and your child has decades of research and support -the internet alone means you have a huge possibility of finding a network of people with the same condition to talk to instead of being alone like you and your family were- and you can make a different childhood for your child. You already have.
Get a great family therapist and get your own if you need someone to talk to for the first few months.
You haven't harmed or hurt your children, you've protected them and given them the gift of a safe and secure childhood and now you have to figure out how to guide them through one of the first big tragedies of their lives. I'm so sorry it's earlier and harder and bigger than it should be - but just by the questions you're asking, about your kids? You are brave and loving enough.
posted by dorothyisunderwood at 5:22 PM on December 11, 2015 [6 favorites]
It's good that you will work to ensure your children's experiences are not the same as yours. Now you need help in developing that plan. Also, cancer treatments are changing daily and what will be your experience may not be your child's in this regard either.
There's much discussion in medicine, and especially in the cancer field, about how to raise children in a family where a parent/sib is under constant medical care. Some research suggests that directed-limited open discussion may be good at parlaying fears and educating the children appropriately without overburdening them; otherwise children hide/act out their fears, misunderstand what is happening around them and may not obtain appropriate medical care themselves as adults. For instance, your child who has the gene-will they be undergoing monitoring? Did the other children also get tested? Are they otherwise of equal health? How will your treatment factor into the monitoring of your child?
Online boards may well be your best resources if the medical genetics counselor cannot provide other resource, you cannot do cash-based counseling for yourself, or you need to prioritize family counseling. I'm thinking Huntington Disease, breast cancer, Lynch cancer, maybe Fragile X or DMD boards would have relevant discussions about balancing the need to discuss sensitive medical information while protecting other family members privacy. And also on how to educate your children about their respective risks, helping them and your spouse through out your treatment as well.
Best wishes with the awesome challenge.
posted by beaning at 5:45 PM on December 11, 2015
There's much discussion in medicine, and especially in the cancer field, about how to raise children in a family where a parent/sib is under constant medical care. Some research suggests that directed-limited open discussion may be good at parlaying fears and educating the children appropriately without overburdening them; otherwise children hide/act out their fears, misunderstand what is happening around them and may not obtain appropriate medical care themselves as adults. For instance, your child who has the gene-will they be undergoing monitoring? Did the other children also get tested? Are they otherwise of equal health? How will your treatment factor into the monitoring of your child?
Online boards may well be your best resources if the medical genetics counselor cannot provide other resource, you cannot do cash-based counseling for yourself, or you need to prioritize family counseling. I'm thinking Huntington Disease, breast cancer, Lynch cancer, maybe Fragile X or DMD boards would have relevant discussions about balancing the need to discuss sensitive medical information while protecting other family members privacy. And also on how to educate your children about their respective risks, helping them and your spouse through out your treatment as well.
Best wishes with the awesome challenge.
posted by beaning at 5:45 PM on December 11, 2015
Please find a decent certified genetic counselor (CGC after their name) to talk to about this in relation to what it means for your offspring. A decent GC should really be able to present you with pros/cons of testing your kids, how to present this, etc. If you don't find one that you click with, please keep looking. Use the NSGC website (professional organization of genetic counselors) to locate more in your area. There are also GCs that specialize in just cancer genetics. They are by and large a very caring group of people who deal with your situation(s) every day and are trained on how to handle these things carefully and properly.
posted by kuanes at 7:16 PM on December 11, 2015
posted by kuanes at 7:16 PM on December 11, 2015
Oh, hugs to you. I know it's not easy.
I mean, I really do know: I grew up with a parent with a hereditary kidney disease and also have the gene myself. Life expectancy isn't terribly promising: My grandfather and great-grandmother died of this in their mid-to-late 30s. My father hit end stage renal in his early 40s, but thanks to years of diligence to his health, good doctors, and the generosity of organ donors, he made it to his late 60s and had a life to be proud of. No one else who has this in my family is alive, though, except my sibling (mid-40s) who is pretty sick these days. There is no cure.
I wasn't diagnosed until I was 30 (1 in 2 chance), but growing up with my dad being sick gave me a lot of perspective and I try to be as brave and as... I guess realistic about it as he was. Like him, I am committed to doing the best I can, to trust what my body is telling me, to handle this with whatever grace I can muster up. Knowing his own father died so young, he would set these goals for himself: Live long enough to see my sibling graduate from high school, to see me graduate from high school, to see us graduate from college, to see all 50 states, to see his first grandchild, and then finally to live long enough that his grandchildren would know and remember him. He did that.
And because he and my mother were so calm and logical about everything, the situation never really frightened me growing up. I mean, I knew he was sick, that it was progressive, that things would change, but he was going to live life to his terms as much as h possibly could. As I got older, they would tell us more. They didn't shield us from all the hospital visits -- and really, I spent weird amounts of time in hospital snack bars when I was a kid. To me, it was normal. And so in a way, my childhood really helped prepare me for what is going on now: I don't freak out when I get tired or when a new and awful symptom pops up. I just do what my parents did and research the heck out of it, take notes, try to map it.
Some things I have learned:
1. No one outside your closest and most intimate group of friends actually wants to know the details of your illness. Honestly. They just want to know if there's anything they can do to help. So you're fine couching it in basic terms. You don't have to reveal the hereditary nature. For teachers, etc., all they really need to know is that you are dealing with a serious health issue and you will keep them in the loop so far as what your kid needs.
2. Your kids are paying a LOT of attention to you right now. It's great to plan and make contingencies (my parents got us life insurance policies when we were kids, knowing that if a diagnosis came someday that we'd never be able to get them on our own). You are human and you don't have to be perfect, but you will help your kid in the long run by doing the best you can and approaching this in a practical way. They will learn from you.
3. Medicine improves every day. There are no guarantees, but I am way better off than my grandfather was, and I have a lot to be thankful for.
4. Try a support group, but leave if it's not for you. I tried a support group and everyone was so morbid and sad that it really brought me down. I do get a lot out of reading support forums online, though.
5. Give yourself some time and go easy on yourself. I did a slow-burn freakout for the first few years after my diagnosis, and it was... OK it was bad. It took me some time to focus and remember what my parents had taught me to be able to handle this in a way that's mentally and emotionally healthy.
Hugs to you. Just do the best you can for you and your kids, be open to change, and try to make the best life possible.
posted by mochapickle at 9:48 PM on December 11, 2015 [12 favorites]
I mean, I really do know: I grew up with a parent with a hereditary kidney disease and also have the gene myself. Life expectancy isn't terribly promising: My grandfather and great-grandmother died of this in their mid-to-late 30s. My father hit end stage renal in his early 40s, but thanks to years of diligence to his health, good doctors, and the generosity of organ donors, he made it to his late 60s and had a life to be proud of. No one else who has this in my family is alive, though, except my sibling (mid-40s) who is pretty sick these days. There is no cure.
I wasn't diagnosed until I was 30 (1 in 2 chance), but growing up with my dad being sick gave me a lot of perspective and I try to be as brave and as... I guess realistic about it as he was. Like him, I am committed to doing the best I can, to trust what my body is telling me, to handle this with whatever grace I can muster up. Knowing his own father died so young, he would set these goals for himself: Live long enough to see my sibling graduate from high school, to see me graduate from high school, to see us graduate from college, to see all 50 states, to see his first grandchild, and then finally to live long enough that his grandchildren would know and remember him. He did that.
And because he and my mother were so calm and logical about everything, the situation never really frightened me growing up. I mean, I knew he was sick, that it was progressive, that things would change, but he was going to live life to his terms as much as h possibly could. As I got older, they would tell us more. They didn't shield us from all the hospital visits -- and really, I spent weird amounts of time in hospital snack bars when I was a kid. To me, it was normal. And so in a way, my childhood really helped prepare me for what is going on now: I don't freak out when I get tired or when a new and awful symptom pops up. I just do what my parents did and research the heck out of it, take notes, try to map it.
Some things I have learned:
1. No one outside your closest and most intimate group of friends actually wants to know the details of your illness. Honestly. They just want to know if there's anything they can do to help. So you're fine couching it in basic terms. You don't have to reveal the hereditary nature. For teachers, etc., all they really need to know is that you are dealing with a serious health issue and you will keep them in the loop so far as what your kid needs.
2. Your kids are paying a LOT of attention to you right now. It's great to plan and make contingencies (my parents got us life insurance policies when we were kids, knowing that if a diagnosis came someday that we'd never be able to get them on our own). You are human and you don't have to be perfect, but you will help your kid in the long run by doing the best you can and approaching this in a practical way. They will learn from you.
3. Medicine improves every day. There are no guarantees, but I am way better off than my grandfather was, and I have a lot to be thankful for.
4. Try a support group, but leave if it's not for you. I tried a support group and everyone was so morbid and sad that it really brought me down. I do get a lot out of reading support forums online, though.
5. Give yourself some time and go easy on yourself. I did a slow-burn freakout for the first few years after my diagnosis, and it was... OK it was bad. It took me some time to focus and remember what my parents had taught me to be able to handle this in a way that's mentally and emotionally healthy.
Hugs to you. Just do the best you can for you and your kids, be open to change, and try to make the best life possible.
posted by mochapickle at 9:48 PM on December 11, 2015 [12 favorites]
In terms of what to tell people, it seems like your situation is substantially equivalent to "I was diagnosed with cancer. The cancer is gone now, but the doctors warn that it may well come back." You don't have to tell anyone that it is a hereditary form of cancer. I'm very sorry you're having to deal with this.
posted by salvia at 10:09 PM on December 11, 2015 [1 favorite]
posted by salvia at 10:09 PM on December 11, 2015 [1 favorite]
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First off--find a way to get some professional mental health care. Credit card if you have to. This is big complicated stuff and you need that support.
But if I discuss it, I disclose the 1 in 2 chance that one of my children has it. And as one of my children do, and we don't want to frighten the hell out of our kid or disclose kids personal medical situation without kid's consent-
Can I just push back gently on this idea? I think it's wonderful that you are respecting your children's privacy so strongly, but getting the support you need from people you know does not have to require violating it. It is allowed and in fact quite positive to set boundaries with those people in sensitive conversations--if they do ask about the hereditary nature, you tell them you will not be discussing your kids' health with them. Your emotional wellness is important both to you and to your kids--having a secretly miserable parent is not good for them.
posted by kelseyq at 3:18 PM on December 11, 2015 [20 favorites]