Hey dads, I'd love to solicit some support. My wife has been dealing with a cluster of health problems that got bad about 3 years ago, though they started well before that. We've recently come to understand it probably isn't going away, and started to recognize it as chronic illness, and not just a series of unexplained episodes. We have a couple of partial diagnoses, but a lot of unexplained symptoms remain. It looks partly autoimmune but includes joint pain, GI, and endocrine issues, and it often flattens her with fatigue. She also has ADHD. Our kids are 5 and 7, and she's a stay-at-home mom. I'm very fortunate to be able to WFH in a stable role.
The hardest part is the unpredictability. Much of the time she manages to do the things she enjoys and we split responsibilities pretty equitably. Then symptoms hit, sometimes as full-blown flares, rarely with any rhyme or reason. She can be fine for weeks or months, then laid out for days, or just powering through the pain for weeks at a time.
That means we'll plan an activity, she crashes, and I'm on the hook with the kids when maybe I wasn't prepared to manage it all solo. She'll say she'll handle something and then isn't able to follow through. She means well, but she isn't realistic about her limits, so we can't fully count on her plans, and I end up quietly building a backup for everything.
I work hard to cover as much of the family routines and chores as I can, and when a flare hits, I step in to manage everything I can, really entering survival mode and carrying out mechanical routines. Our kids aren't the hardest, but our youngest pushes boundaries constantly and needs a lot of active management, which just adds to the energy cost of life. We have almost no backup: her parents are gone and mine aren't particularly helpful.
My intention isn't to complain. I know she's the one suffering and I really do my best to support her in every way I'm able. But I'm worn down, and a few things make it harder:
My time off isn't really off. She's supportive of me taking a break, say on a Sunday when we don't have plans, but I'm always braced for the bottom to drop out, so I never fully switch off.
She needs a partner, and I'm tapped out. Especially when she's feeling vulnerable, she wants me present and supportive, and by the time I've dealt with the active crises and routine upkeep, there's little left for her.
I can't show I'm struggling. She reacts badly to any hint that I'm unhappy or burdened. I assume it's guilt and fear, but it leaves me with nowhere to put it.
She's very sensitive to perceived criticism. Even a small ask, like a dishes-related request, can blow up, and when she's flooded by her limitations she can get controlling. I get that she's frustrated by her lack of control and agency, but it means I end up quietly absorbing a lot that I don't feel I can share back.
A small example from this week: I used to love elaborate Halloween costumes and decorations, and I just can't find the energy for it anymore. It still matters a lot to my wife, and she's pouring herself into making custom decorations, potentially to the point of burning out and making her symptoms worse. I admire that she cares about making things beautiful, and I'm glad she's spent the time. But I'm over here doing routine chores and chipping away at a backlog of deferred maintenance, and I miss being the person who was excited to put together something goofy for the holidays.
We're in couples counseling, which helps. I'm reading The Invisible Kingdom, a great book about chronic illness. I'd love to find resources aimed at spouses and partners, since most of what I find is for the patient.
What I'd love to hear from other dads in this situation:
How do you actually recharge, not just "take time," when you're always on call mentally?
How do you plan family life when your partner's capacity is unpredictable and her plans don't always hold?
How do you stay emotionally available to a partner who needs you when you're already depleted?
How do you make requests or set boundaries with a partner who's sensitive to perceived criticism, without adding to her guilt?
Any books, communities, or groups for spouses of chronically ill partners?
I know a lot of you have lived some version of this, and I'd appreciate hearing any wisdom you have. Thanks for reading, I know this one is long.