Support when your spouse has a chronic illness?
January 16, 2018 1:35 PM Subscribe
My wife was diagnosed with an autoimmune disease a little over a year ago. We've found online communities that provide her with fantastic support, but I haven't had any luck finding similar communities geared toward spouses/partners. I'm trying to find a (probably online) group of other well spouses that could provide support and community for me. Any ideas?
I would love to be able to talk to other spouses/partners who have similar experiences, especially folks who are relatively young (we're in our 30s). A lot of what I've been able to find so far has seemed targeted at couples who are substantially older and where the ill spouse is very significantly disabled. A lot of it has also had a very negative tone. Thankfully, my wife is getting great treatment and is doing well overall, but she still has regular flares where she's exhausted and has trouble thinking clearly. Even when she's feeling well, we have to be very careful about her rest and eating and activities to avoid triggering a flare. I'm hoping to find a place where I can talk about those aspects of our life and get ideas for how to handle them.
We are a queer couple so I'd want to steer clear of anywhere that would be a problem. And we're interested in having kids so I'd be particularly interested in resources for parenting when one spouse has a chronic illness.
I would love to be able to talk to other spouses/partners who have similar experiences, especially folks who are relatively young (we're in our 30s). A lot of what I've been able to find so far has seemed targeted at couples who are substantially older and where the ill spouse is very significantly disabled. A lot of it has also had a very negative tone. Thankfully, my wife is getting great treatment and is doing well overall, but she still has regular flares where she's exhausted and has trouble thinking clearly. Even when she's feeling well, we have to be very careful about her rest and eating and activities to avoid triggering a flare. I'm hoping to find a place where I can talk about those aspects of our life and get ideas for how to handle them.
We are a queer couple so I'd want to steer clear of anywhere that would be a problem. And we're interested in having kids so I'd be particularly interested in resources for parenting when one spouse has a chronic illness.
A chronic illness is a whole-family affair, as you are finding out -- everyone else besides the "sick" one needs support as well. You don't mention specifics, so I'll mention the support site I've run since 1994, IBD Sucks. It's a support forum focused on inflammatory bowel diseases, primarily Crohn's Disease and Ulcerative Colitis. It's a lot less active than it used to be, but there are still people who participate. (I'm afraid I can't give any hard numbers since I never paid much attention to that, and it runs on a truly ancient pre-MacOS X server. I've never kept any statistics.)
But we've always been about helping each other out, including spouses, parents, children, and siblings of the ones who own the diagnosis.
You're welcome to have a look, no one will see you there unless you speak up.
posted by qurlyjoe at 4:20 PM on January 16, 2018 [3 favorites]
But we've always been about helping each other out, including spouses, parents, children, and siblings of the ones who own the diagnosis.
You're welcome to have a look, no one will see you there unless you speak up.
posted by qurlyjoe at 4:20 PM on January 16, 2018 [3 favorites]
I regularly scan through several forums related to my illness as well as a few others where treatments may be similar. Each one have their own character and group of characters. One thing I've noticed recently is a small uptick of family members asking questions and sharing experiences as well. These have been generally well received and appreciated.
If you're willing to share the specific autoimmune condition here or in a memail, we might be able to get you some specific recommendations?
posted by michswiss at 5:23 PM on January 16, 2018
If you're willing to share the specific autoimmune condition here or in a memail, we might be able to get you some specific recommendations?
posted by michswiss at 5:23 PM on January 16, 2018
If you're on facebook, there are groups for "caregivers" or spouses. Even if you're not on facebook already, this may be a good reason to join. I've found fb groups to be very helpful for some of my unique issues. For example, if MS is your wife's diagnosis, then there's Spouses with MS on facebook.
posted by hydra77 at 5:43 PM on January 16, 2018 [1 favorite]
posted by hydra77 at 5:43 PM on January 16, 2018 [1 favorite]
My spouse also has a chronic illness and we're in our 30s. Unfortunately I've had a hard time finding a good online community for younger caregivers. I'll be following this thread to see what comes up though. Also, feel free to memail me.
posted by bajema at 8:12 AM on January 17, 2018 [1 favorite]
posted by bajema at 8:12 AM on January 17, 2018 [1 favorite]
Response by poster: Thanks! I appreciate all the responses. Her illness is lupus, but I'm definitely interested in more general autoimmune disease or chronic illness resources as well.
posted by zahava at 8:33 AM on January 17, 2018
posted by zahava at 8:33 AM on January 17, 2018
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Edit: I don't know why, but it's not letting me link, so here you go:
https://www.patientslikeme.com
posted by honeybee413 at 4:19 PM on January 16, 2018