I don't want a double life of being seriously ill
November 7, 2016 1:53 AM   Subscribe

I'm getting a diagnosis for something that if not cancer, is likely equally annoying given other health complications. I have access to good healthcare and things are speeding up, meaning frequent appointments at the hospital, insurance bills and probably risky surgery soon. However, the timing sucks. I'm divorcing with shared custody, starting university for a career change and next year moving countries. In two weeks I'm supposed to start two papers, I'm primary parent and my ex is behind on financial support. I need strategies for specific challenges.

Take as read I am in therapy, joint and individual, and my long-term plan is supported by family, friends and therapist.

I really really don't want to discuss my medical situation in any detail with him because of difficult past actions there, and because he will talk about it with or in front of our children.

My kids are age 5 to 24, and they are worried I will die because they've seen me go in and out of hospital and I've had to do the reassurances in the past when there was a risk I would die. They're still dealing with the divorce, and the prospect of some of us moving.

I want to keep everything calm until there is an ironclad diagnosis and treatment plan, and minimise the stress for the kids. I want to involve my ex as little as possible.

A big complication is that we still attend the same church, and have many shared friends, some very close. I don't want to put them in the middle with a secret either.

What's a strategy for health info with friends & family that is private and sensible and doesn't require me to be a secret superwoman?

How do I know when is the right time to tell my kids that it's more than the usual check-ups?

If you've been an ex of a financially controlling partner, does having a bulwark of money against them make a significant help in establishing a boundary of privacy?

And how do I figure out if I should drop or both papers, delaying my dream of going to university again? I feel a bit rubbish now, but mostly okay.
posted by dorothyisunderwood to Human Relations (13 answers total) 3 users marked this as a favorite
I'm sorry you're dealing with this.

A couple of thoughts:

* Given the wide range in your kids' ages, I think that you'll want to talk to them differently and at different times. Your 24yo may be ready to hear the broad strokes of what's going on now (I'm 26yo and would want my mom to talk to me at this stage). Your 5yo may not need to hear anything beyond "Mom is very sick right now," and probably not even that until you have an official diagnosis and prognosis.

* Don't feel rubbish for postponing university. Even without being sick, you are doing SO MUCH right now. There's nothing wrong at all with taking some things off of your plate until things are better. Set yourself up to succeed by delaying school until you're in a place to thrive there.
posted by schroedingersgirl at 3:32 AM on November 7, 2016 [4 favorites]

A thought re: church- are you able to speak confidentially with the Pastor (or pastoral care team) for prayer and quiet support?
posted by freethefeet at 3:53 AM on November 7, 2016 [2 favorites]

Money is just a tool your ex is using to mess with you. If you have a legal agreement , you could file contempt for the money he owes.

I think you are going to need to be open with your support system. Your ex is now a thing that largely exists outside your reality. You dont care what he says or does or thinks as long as he's not abusing your children. Don't let his potential thoughts or actions change the way you'd send this time.

Finally, I'd hold off on dropping your classes. If and when they become a burden, the dean will let you withdraw. You need to take these decisions a day at a time. Your future will unfold, but maybe not at the pace you'd hoped.
posted by Kalmya at 4:13 AM on November 7, 2016 [1 favorite]

If you drop your classes before you tell your children about the diagnosis, the mere fact you dropped will indicate to them there is something wrong.
posted by AugustWest at 4:27 AM on November 7, 2016 [1 favorite]

You've got a lot going on. I know you have some very immediate health and family concerns. I'll just talk about the divorce part (Q2). One thing that was super difficult for me was moving towards a more 'business-like' arrangement with my ex. I wanted this, but while my controlling/manipulative ex wanted divorce etc. they somehow still wanted to be married (in that I would pick up all sorts of parts of their life). Drawing this line is a lot of emotional work, but maybe if you work towards this over the long term, this can clarify how you can set boundaries in your relationship going forward.

Then, having the boundaries can help clarify how you move forward with your life, which is your life. Basically, you don't need anything to establish a bulwark of privacy. That is your absolute right. Maybe you could probably do it now but for the baggage and dynamics of the marriage (I'm speaking from my experience). Could you talk to your therapist about creating boundaries and drawing a line under the whole thing? Once that space is established your decisions about other areas may become clearer, if not necessarily easier. You have a lot going on without dealing with crap from your ex.

Good luck.
posted by life moves pretty fast at 4:44 AM on November 7, 2016 [1 favorite]

I would probably put health before writing but I don;t know your specifics. Having said that, for the writing, can you assess exactly what you need to do? Are you starting from scratch? Are you writing up data? Etc. Are these one-off opportunities to get research out there? Are you co-authoring (you could possibly ask for help here due to family circumstances)? I don't know how old your kids are but one strategy might be to tap your support network to structure time off for writing - baby sitters? play dates? sleepovers? - anything to carve out undisturbed time. Then you ignore the housework and start writing.
posted by carter at 5:07 AM on November 7, 2016

I'm the mother of grown kids who are all now in their forties. I went to college as a single mother with three kids so I know how hard it can be. Will the university courses you are doing now be done once you hand in those papers? Or did the courses just start? In the US (and I'm assuming you are not in the US) when students are unable to complete course assignments on time because of medical or family reasons they are given an "Incomplete" and allowed extra time, usually several months, to complete their work. Check to see if this is a possibility in your program.

As far as telling your children I think that the older ones, maybe 15 or older, need to know what's going on. They can help out a lot if they're willing. And yes, reach out to everyone you can, and borrow money if you need to.
posted by mareli at 5:23 AM on November 7, 2016 [1 favorite]

Sorry, I misunderstood the types of papers you are writing. For class papers, I'd advise immediately sending a brief email to both your prof(s) and your academic advisor, warning them in advance that you are having life emergencies (no need to be very specific) that could interfere with your coursework. A good prof will help you plan ahead and advise you. This is much more preferable to letting them know after the fact that the papers might be late.
posted by carter at 5:29 AM on November 7, 2016 [3 favorites]

Clarification for US readers: I think the asker means by "papers" what you call courses or classes. Thats how they are referred to in several non-US countries. So I read this as they are about to start uni, taking two new courses.
posted by lollusc at 5:46 AM on November 7, 2016 [1 favorite]

I'm sorry your ex sucks.and I am so sorry you have to deal with this.

Frankly.... I watched this situation (in this case, breast cancer) unfold in my extended family and I have to say...I think it was a mistake that she was not up front with her ex, even though he was a jerk. It didn't result in much real privacy; it resulted in her kids being desperately confused and unable to talk to the other, surviving parent openly about their concerns. Or her. 10 years later I would say it seriously impacted them.

Some of this will depend on your child rearing philosophy of course but personally, I would be open if age-appropriate with your kids so that they come to you with their questions first. But also with your community so they can support you, and in short sentences, with your ex so that he is enabled to be there for your kids. You do not have to engage with him about it, but consider emailing him brief facts. Then, after he has the need-to-know bits, don't discuss further. Privacy comes in many forms.
posted by warriorqueen at 6:17 AM on November 7, 2016 [3 favorites]

If your kids are already worried about you dying, I don't think everything is actually calm :/ Kids are sensitive to mood and atmosphere, as well... it may also be that despite your best intentions, the stress of all this might be leaking out in ways you're not now able to recognize... I don't know if you can tell just one of your friends without it getting out in a short time; people are usually terrible at keeping secrets. And I agree with you that secrecy is another burden, for you.

In short, I think you should find a way to tell your kids, and also your most supportive friends, assuming that this will get to your stbx, that he'll be awful about it, and that you'll probably have to keep an eye out on your kids to see how they deal with things, and correct any misinformation your ex gives them. Agree that your older kids might be helpful with the younger ones.

Is there a social worker at the hospital who can advise on how to break this news to everyone? Maybe a friend - or your church leader - will have some helpful thoughts. (They may also step up if they see your stbx getting out of hand.)

(If these are year-long courses, maybe keep one and drop the other. One might be manageable. If they're half-year courses and you're anticipating surgery, I think postponing them is a good idea. Not least because the admin involved in other workarounds might itself be another stress.)
posted by cotton dress sock at 6:17 AM on November 7, 2016 [2 favorites]

I want to keep everything calm until there is an ironclad diagnosis and treatment plan, and minimise the stress for the kids. I want to involve my ex as little as possible.

You are doing so much. I think you should look for ways to let others help you share the load.

As mentioned above, tell your older kids now. I assume they are out of the house so maybe can't help with the day to day, but they care about you, and can't help at all while they are in the dark. For the younger kids, I'd lean towards waiting until there is an "ironclad" diagnosis.

What's a strategy for health info with friends & family that is private and sensible and doesn't require me to be a secret superwoman?

Do you you have blood-relatives around? What about friends who, even if they attend the same church, might feel closer to you and the kids than the Ex? I think it's reasonable to ask for help/support/advice/whatever from some of those people, with the understanding that you'd like to delay telling the Ex for now. Your reasons for not wanting the Ex to know are reasonable, and hopefully they will respect that. There's a risk that someone might blab, always, but trying to steer this ship all by yourself is risky in it's own ways.

Overall though, I think you need to think through everything that you've got in front of you and figure out what is going to have to give. How will moving countries affect your treatment plan? Is it something that it still makes sense to do? Do you feel confident in your ability to get a good start on your planned studies with where your health is right now? What if it got better? Worse? How is your budget, considering that your Ex is being a deadbeat? Given your financial resources, would you be able to handle primary school aged kids and university and the move even if you were well?

If the move is something that will make things better (are you moving closer to family?) I'd focus on that -- muster whatever help you need to make the move as fast and painfree as possible.

Finally, if the prognosis is not good (even just in terms of long-term quality of life/energy/ability), your Ex is going to need to be more involved with the younger kids. Spend some time now, while you're waiting for the diagnosis, to figure out what you want that to look like a year, or two years from now. Because when you do tell the Ex, you'll want to be ready with a plan).

I'm sorry this is falling on you.
posted by sparklemotion at 9:28 AM on November 7, 2016 [3 favorites]

A much happier update: it's not cancer! I have basically a ripped up stomach, hence the bleeding and pain. It's treatable with medication and I have more exciting diet and immune system disorders to explore, but it's not late stage cancer, so YAY!

Thank you for all the advice - I would have marked everything best as each answer had something helpful.

I immediately dropped my harder paper with fixed exam dates. I've since replaced it with a Coursera paper that is a related subject that I could drop or retake and move around. That has helped A LOT. This is a Summer School term, and I'm taking a part-time load so I have some flexibility at this point.

I tailored an age-appropriate explanation for each kid that was brief. I said I hadn't told them up to now because I thought it would be fixed quite quickly but it looked like this would be a long illness.

The cancer and serious illness advice blogs and research was pretty much unanimous: tell children early, appropriately and keep things as normal as possible. They had some good specific lines to include that my kids responded to, like that cancer wasn't contagious, that they hadn't caused it, that I was in discomfort but it almost never hurt very much.

The boundaries and financial notes also helped. We had some family therapy conversations before and after the clear diagnosis and he's been respectful of the new boundaries so far. It was also surprising to me how vastly better being sick alone was than being sick with him by my side. Sick and alone by choice in the hospital with the support of friends and family nearby was both private and comforting.

I also chose deliberately to emotionally stay in mild shock/disbelief until the diagnosis came in, watching TV and hanging out with my kids because I knew I would either get really bad news or kinda bad news and I didn't want to spiral into death-planning unless I had a timeline. And now I'm planning a slower gentler and smaller schedule. Happily.
posted by dorothyisunderwood at 5:33 AM on November 26, 2016 [1 favorite]

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