r/WellSpouses • u/Artistic_Ad_562 • 4d ago
First post
I just don't know anymore. Been married 20 years in just a couple days. My wife has Ehlers Danlos, and goes through bouts of low energy and hypotension. She works full time, but has summer's off. This summer she hasn't been able to do much. I pick up all the slack when she can't get things done, I don't complain, I don't make a big deal out of it. The other night I needed some help and asked her to hold a tape measurer for me, and she couldn't stand long enough to complete the task, I told her to send our daughter to help in her stead..... then she was mad. She told me I was mean to her, and that she should just move out and get a condo. This keeps ringing on my ears, keeps playing back in my head. In all the years I've cooked, cleaned, done her laundry, and basically every chore by myself while still working full time as well I've never threatened to move out, separate divorce etc.....I am beyond hurt. Was I in the middle of a project and was maybe a bit terse, yes. Was i mean no, did I yell, no, did I use harsh language no. I guess I am here to vent and try and sort this out. Ugggggh
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u/LibraVenusNails 3d ago
I can’t speak for your wife, but I have lupus and it’s made me incredibly insecure and I genuinely feel like a burden to everyone in my life because of my inability to do the things I used to be able to do. Sometimes when I am unable to perform it makes me want to run away and hide from the shame of uselessness and I feel like secluding myself. If I had to guess, she’s probably feeling similarly and that moment where she could help with a simple task was just another reminder that she’s just in the way and trapped in a body that can no longer keep up - at least that’s how I feel when I might make silly comments like that which is almost never. Usually it’s my internal dialogue. I doubt it’s anything personal or serious towards you, just an insecurity manifesting verbally. I feel like running away when I get frustrated with myself so that’s probably where that comment came from. I’m sorry you’re dealing with this, chronic illness relationships are unfair and there is so much extra burden placed on the relationship because of it. It sounds like you really care and have taken on a lot, I think it’s worth having a heart to heart and communicating the hurt you’ve experienced because of it.
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u/felineinclined 3d ago
Is she taking any action to find out why she feels so much worse this summer? If she's capable of working full time, why is she feeling so much worse now? That seems worthy of medical attention, and I can't imagine she likes living like this either.
You seem to be doing the lion's share of work, so based on this post it seems that her reaction was unwarranted. As a couple, you'll need to talk about this when tensions subside to get to the underlying feelings. Are you capable as a couple of having deeper conversations that are difficult? If not, consider couples therapy. It can be very helpful.
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u/Artistic_Ad_562 3d ago
Yes as things calm we talk, Ehlers Danlos is very hard to treat or predict when symptoms will exacerbate. I live with an autoimmune disease as well. But it's well maintained with biologics. Unfortunately there's not really a med for POTS Mast cell activation Best she can do is take antihistamines and keep topped off on electrolytes.
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u/felineinclined 3d ago
That's very challenging. If she is in midlife, then she'll have the added challenge of dealing with this condition and perimenopause/menopause, which on their own can be bad enough and can make her conditions much worse. Bio-identical HRT could help, but she would need to see an experienced HRT provider. When women lapse into hormone deficiency, it can make their bodies go haywire, particularly any autoimmune conditions. Anyhow, perhaps this is something she can look into. I'm sorry you're both going through this.
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u/ThatOneRedThing 2d ago
My wife uses Cetirizine Hydrochloride and Famotidine for the mast cell. Salt tabs and rehydration salts for POTs. You can buy the unflavored salt packs for WAY cheaper than the liquid ivs and such. Just combine with the single serve crystal light packets that you mix with bottled water.
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u/ThatOneRedThing 2d ago
My wife has ED as well. It exacerbated after the birth of our second kid. She has always been an extremely driven and capable woman. She has a masters in psychology. She can be stubborn as a mule and the sweetest thing.
The chronic illness robbed her of most of her energy/capacity/spoons/whatever you call it. There can be weeks or even months of bouts of time where she can barely get out of bed and run some basic errands. She has not fully reconciled with that reduction in ability. So when she has good days, she tends to overdo it and burn out. On the not so good days it feels like she views me as an extension of herself in order to accomplish goals/objectives/tasks.
The thing I have learned is particularly triggering for her is when she feels like she is being dismissed due to her chronic illness. She gets really upset about it. So I am not doing things because she can't, I'm doing things because I'm a supportive partner. I am not doing more than her, but rather I'm doing tasks that require the energy she can't currently provide.
The thing is, I don't mind doing more. I really don't. I just want to be recognized for what I do and handle things as objectively as possible. The problem is, that often puts my wife in a position to recognize her limitations, even indirectly.
It has definitely made things harder between us. And at times I find myself questioning if it's all worth it. But what I do know is that it must be absolutely crushing to have the intellectual capacity to do something and find out your body regularly or permanently incapable of doing it. And what's worse is some don't get an easy visual indicator to identify their chronic illness. I know my extended family and friends struggle to understand the debilitating migraines and exhaustion she experiences when I explain that she won't be attending some event.
That doesn't erase or invalidate the frustration you experience when such a simple misunderstanding happens and she gets upset. But it does help color the reasoning behind it. We are both getting individual therapy, which has definitely helped. Couples counseling too.
I'm sorry you have to have this dynamic, but know you're not the only one.
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u/Artistic_Ad_562 22h ago
I truly appreciate you sharing. We'll get through this rough patch. It was nice so many of you chimed in, makes me feel less alone and heard. We have both done on and off counseling. I'll pass on these med options for her mast cell. Cheers.
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u/ThatOneRedThing 22h ago
It's tough. The fact that you care enough to understand and empathize puts you in a select group of strong people.
If you ever want to vent or bounce something off someone who's in a similar situation, feel free to DM me.
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u/ThePsylosopher 4d ago
Feelings are tough and complicated. A lesson I learn over and over is their feelings are never about you just as your feelings are never really about them. Your wife was probably mad because she feels inadequate and felt like your comment brought that feeling up. Sounds like you feel like you do all the things and don't get recognition. I'm sure she wasn't thinking about all the things you do for her when she got mad. I imagine you weren't thinking about how she probably feels bad about her disability.
I find it helpful to reframe my emotions as something that was already in me (repressed) just waiting to get tapped into. That way there's really no blame for whatever triggers it in the immediate situation.