How to support my partner in a time of fear?
March 27, 2012 12:37 PM   Subscribe

[family support question] my partner's mom is sick. multiple autoimmune conditions, potentially cancer now. how can i best support my partner (on multiple levels)?

my partner's mom has multiple things going on. at least 3 autoimmune disorders and now potentially cancer or another serious condition. my sweetie has chronic fatigue syndrome (thankfully in remission currently) but all of this has made her afraid:

(a) just for her mom's health;
(b) afraid of what may be coming down the line for her as she ages;
(c) afraid of having kids genetically related to her - she does not want to "give them" (her words) all of these potential conditions; and
(d) afraid that she'll be a mom who is sick with her kids and a partner who is sick with me.

i want to be as supportive as possible right now. i am validating that it is scary for her mom to be sick and that it is must feel scary that she is afraid that she may potentially get any one of these conditions as she ages (those are her fears). i am validating that i am by her side and ready to take on what life brings us as a team and individuals. i am totally at a loss for words when it comes to our potential kids. (we cannot have kids with our combined genes because we have similar body parts - she has always wanted to be pregnant and have a child with me through that process). i don't know what to say about it. my instinct is to talk science, facts about genetic conditions, etc. but i do not think that is helpful right now. i am not trying to "make it better" because i may not be able to.

she is not a person soothed by facts generally - at least not at first. i am a person who loves reading and knowing as much as possible - even if it is a false sense of security or "control" that comes from it.

clear questions: suggestions/recommendations/stories about how best to support my sweetie? what to say? do? book or resource recommendations for me to take care of myself and my love?

thanks so much.
posted by anonymous to Human Relations (6 answers total)
Speaking as someone who is and has been in a similar circumstance to your partner, the most important thing is to let her know that her fears and feelings are valid. I spent years encountering loved ones and medical personnel who made light of potential risks and it made me feel like I was crazy and that no one was listening. Then I had a doctor who said, You know, your situation sucks. It's not fair. It won't be easy. That's valid. After I had this experience, it was so much easier for me to be open to science and be more accepting of potential paths. Second, it's important that she knows that you acknowledge it may be a tough road, but you feel you can make the best of it together. She's fortunate to have found you.
posted by mochapickle at 1:01 PM on March 27, 2012

1- Genetics is a crapshoot. Genetic counseling might be a good idea, to get a real answer to whether the conditions are heritable.

2- I've known a couple of families with the "sick/weak parent" and it didn't really seem to make any difference to the kids. The decision to have kids should be about whether someone has the emotional and (maybe) the financial wherewithall to do it. Parenting (so I've been told) tires EVERYONE out, so it might be a trigger for the CFS, but it might not. It also seems to give people strength and stamina, so it balances out. Kids are resilient, give them love and support and you've done your job.

3- It's OK to worry about stuff, and it is good to plan for future possibilities. When it stops you from doing things you want to do, or tricks you into not wanting to do them, that's when it is out of control.

4- Hope everything turns out positively for everyone.
posted by gjc at 2:35 PM on March 27, 2012 [1 favorite]

I know this sounds simple, but what I did for my buddy who was taking care of a similar situation with a very sick parent: read up as much as possible on the illnesses affecting my buddy's parent and the course of treatment and recovery (so that my friend would have someone to talk to other than medical professionals and not have to provide explanations to me every 5 minutes), and reminded my friend that I was here to listen whenever I was needed.

We spoke multiple times per week. Many times I listened to what was going on, but even more often, we just spoke about the day or shared happy memories. I wanted to be that constant.

We certainly had some arguments, and there were times when my friend's frustration level topped out and I was the only person to take the brunt of anger and depression.

My friend's parent is doing much better, and our friendship is stronger now, but it's not easy.

I commend you for being a loving and supportive partner; I wish the best for you all.

But my advice? Be there.
posted by sara is disenchanted at 3:58 PM on March 27, 2012

Anon, I'm happy to hear your partner's CFS is currently in remission. That's a very, very fortunate situation to be in. I have it too, and mine has proved to be progressive and severe - I'm about 95% bedridden, but no longer 100% so, which is wonderful!

It also sounds to me like you're doing a really great job of being supportive already. Your partner is facing some scary subjects, and your approach thus far sounds just right to me.

Living in fear of CFS is an enormous burden to carry. It's probably not just the fear of being ill, but the fear of all the awful incapacity that can come with worsening CFS, if it goes beyond mild into moderate or severe - losing the ability to work, to shop, to do many activities of daily living, to self-care. It's totally normal to be afraid of things like that. Many of those things will probably happen to most people at some point, but with CFS, there's the very real possibility of being struck down in youth or mid-life.

As sara suggests, gathering the knowledge that will help you have an informed conversation with your partner might help you feel more able to help her, since you're the kind of person who likes to gather information. That's something concrete you can do for yourself that might pay dividends later. Maybe she'll be more receptive to learning through you rather than having to go out and get the information herself. I know some people who can't seem to read medical anything without worrying themselves sick - it's just some people's nature.

I think the most important thing you can do for her is keep consistently showing and telling her that you're going to be there for her, no matter what happens to her mom, and no matter what life brings for the two of you. Maybe as she sees you helping with her mom's continuing health situation (I'm assuming here that you're near her mom) she'll start to be soothed that the two of you can manage your own health problems together if they come.

Now for more CFS specifics.

Some people with CFS get a respite from it when they get pregnant. I just saw my specialist (Dr. Paul Cheney) last week, and he explained that pregnancy can act like a reboot on the immune system. Sometimes, though, he said, post-pregnancy, people get worse. It's one of those things about CFS that's not well understood, unfortunately.

There is some thought that people with CFS may be at greater risk for ovarian cancer. Dr. Cheney has had more patients than he should in his practice with it. It's one of those things that is emerging anecdotally from the few specialists in the disease but about which there is not a definitive study yet.

Also anecdotally, CFS does seem to run in some families. It's not known yet if it's genetic or communicable, but I know quite a few families with more than one sufferer. Dr. Jaime Deckoff-Jones and her daughter have it. Sue Jackson and her two sons have it. Ash has it, but her daughter Rhiannon doesn't, and here she writes a little about their relationship.

My husband has stuck by me through my terrible health challenges, and he wrote a two-part piece for my blog about how he copes with my situation that's gotten a lot of good responses, so I'm going to share that with you too. I hope you'll find his perspective helpful. Chimp Speaks Part I: "I realized that what was happening to us has happened, in one form or another, as long as their have been partners and families." Chimp Speaks Part II: "I found myself repeating something to myself and, at times, to others. I should let the good days be good and let the bad days be bad. "
posted by jocelmeow at 4:44 PM on March 27, 2012 [1 favorite]

Anon, this personal story about parenting with CFS popped up in my facebook feed today.
posted by jocelmeow at 7:26 AM on March 28, 2012 [1 favorite]

[This is a followup from the asker.]
Thank you all so very much for your suggestions and support. There is a lot of good advice here. I will definitely read your CFS links, jocelmeow.
posted by cortex (staff) at 7:59 AM on March 28, 2012

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