Hope me! Sick spouse and relationship edition
August 6, 2022 12:01 PM   Subscribe

TLDR: My spouse has mast cell activation syndrome (MCAS), a chronic illness that's leaving them physically, mentally, and emotionally volatile. We have a toddler. I basically do all the things to take care of everyone and everything. I feel miserable and trapped, and I don't know where things go from here. Hope me! (more below the fold)

I kind of dread being around my spouse now. They're like a black hole of rage, despair, and occasionally being mostly okay for a minute. But even okay now feels like the eye of a hurricane; we're still surrounded by the storm.

I'm almost exclusively the sole wage earner. Finances are tight because my spouse hasn't made much money the past few years. Their parents have helped us out here and there. We own a house that we bought before they really started to deteriorate. We have a very low interest rate that we could never get now, and the house has appreciated in value, but rents have increased dramatically and selling would only give us short term help at the expense of the long term.

I do almost all the parenting of our 2 year old. I feed, I get up in the morning, I provide comfort when kiddo isn't feeling good or having a toddler fit. My spouse does bedtime the majority of the time, either alone or with me.

I'm the favorite parent (this used to be the opposite when kiddo was a little baby). My spouse is hurt by this. They take it personally and emotionally, and as a result, they're sort of withdrawing more and more. That, and spouse's emotional outbursts, may be creating a vicious cycle that will keep their relationship going in the wrong direction.

MCAS is a multi-system, multi-symptom disorder. Sometimes it's fatigue, brain fog, pain, dizziness, nausea, diarrhea, trouble breathing, or just craziness. Mast cells freak out in response to histamines or stress, among possible other triggers.

Histamines build up in food such that many foods are off the table, leftovers are a no go, and restaurant food is not tolerated terribly well. Food really needs to be made fresh, with less processed ingredients, which means it takes a lot of time to prepare. I do all the cooking.

I also do all the cleaning, laundry, and dishes, although our house often remains less clean than it ideally would be. I do all the dog walking. Our dog is a pain in the butt sometimes, especially without enough walks, and I bring kiddo along.

Our parents live in other states on opposite sides of the country. My spouse's parents visit much more often and are closer than mine.

None of this is my spouse's fault. They've seen a lot of doctors over the years. They're now seeing a chronic illness specialist. They're trying various treatments, but there's no magic bullet for MCAS. There are still probably two medications left to try, but they're titrating up another one right now and it's not a great idea to just throw everything in all at once (they can react negatively to medications).

Despite finally getting a diagnosis a year ago, progress has been mixed. A step forward, a step back. Two steps forward, one and a half steps back. It's probably a degenerative chronic condition that will only get worse over time. It's correlated with early dementia.

I don't like doing everything, but I could probably do it, if that were all. But my spouse is increasingly inflexible and intensely negative. If I say they can do things and things might get better, they get mad; if I agree with their more negative view, they get mad (when they're in a symptom flare or not doing well).

It's like living with someone with borderline personality disorder (BPD). Maybe I am living with someone with BPD. They're very emotionally needy, and I've been very good at helping them through tough emotional times over the years, but that's becoming more and more of a problem (both the problems and my ability to help). They've been talking about wanting to die for a year or more, again, during the bad times but not the okay ones. They yell and scream about minor stuff, and I feel like I'm walking on eggshells around them. I feel like I can barely breathe, barely exist.

There aren't really good times anymore. We don't really do the things we used to enjoy doing - gaming, camping, hiking, paddling. Vacations are a source of stress, not a source of enjoyment. I see my, or our, friends much less often.

They say they would die without me, or kill themself without me. I don't believe this is intentional manipulation. I think they believe it to be true. I think it's possible, but it's hard to predict the future.

They talk about wanting to kill our dog sometimes, when they're not doing well and the dog is being annoying. Sometimes when they talk about wanting to be dead (the spouse, not the dog), I wish they were, and I feel incredibly guilty about that. But my life would be so much easier and calmer and more manageable, and I crave that. I've never told my spouse this. They might suspect it - they talk about wanting to not be a burden. When they're an asshole, they recognize it and apologize as soon as they calm down.

It's good for a kid to have two parents. My spouse loves our child. My spouse couldn't handle 50-50 custody. I'm not sure they could handle weekends on a regular basis.

Sometimes I think about divorce. I don't really think my spouse could take care of themself on their own. They could move back in with their parents, which would ultimately be hard on both my spouse and their parents. Part of me wonders if they would function better if they were forced to, but I suspect it's unlikely.

I meant it when I said "in sickness and in health," but I didn't expect this. And I feel like my top obligation now is to our child. I don't think we're at the point where it would be better for my child for us to get divorced, but it's hard to know. I don't want them exposed to so much emotional turmoil. I don't want to model unhealthy relationship behaviors. Under other circumstances I would not continue in a relationship where my partner behaved like this, but context matters.

The logistics of divorce would be a mess. We can barely afford to live together in our city. We couldn't afford to live here separately. My spouse's parents and my parents both have big houses and either would let their child (and grandchild) move in, but they're on opposite sides of the country.

I have a fairly stable career and well paying job. I could get a job making more, but I'd have to work more hours, and I simply don't have more hours.

This all just sucks. It's really hard. I don't know what to do. I don't see a path forward that isn't terrible. The best path forward would be if my spouse's health improved and went back to more like the old normal, or at least a new normal that they could accept. I don't feel optimistic about that. I really do love them, but I don’t enjoy them anymore, when they’re like this, as awful as that sounds.

I guess that's my question. How do I know what I should do? What should I do? How do I chart a path forward that isn't horrible?
posted by J. Wilson to Human Relations (48 answers total) 12 users marked this as a favorite
This is incredibly unfair, for everyone involved. It's like your life was stolen from you both. I'm so sorry.

Nonetheless, you cannot stay in a home with someone who is threatening to kill your pet. Put aside what it forebodes for violence against the household if you can't bear to think about it (it is a classic red flag for potential partner murder). How do you think your child is going to feel the first time they understand what your spouse is saying? I am telling you it will cause the kind of terror and uncertainty that could stick with them for life.

Your spouse's behavior is effectively abusive even if it's not their intent (and I admit I don't know much about MCAS, but while it sounds absolutely miserable, it's not a mental illness). It's not a question of fault. You cannot stay.
posted by praemunire at 12:19 PM on August 6, 2022 [32 favorites]

Can you afford part time help? Has your spouse applied for disability? Has she seen a therapist or a mental health professional?
posted by kinoeye at 12:23 PM on August 6, 2022 [5 favorites]

(Note that OP didn't gender their spouse.)
posted by praemunire at 12:24 PM on August 6, 2022 [7 favorites]

But, absolutely miserable physical issues, especially if they seem chronic and degenerative, can totally lead to mental illness challenges.

Sorry I don’t have a good answer for you. Sounds terrible. Hang in there and figure it out.
posted by Windopaene at 12:25 PM on August 6, 2022 [2 favorites]

Are you or spouse in therapy? Are you willing to be? There are therapists that focus on dealing with the mental, emotional, and life changes caused by chronic illness. There are also therapists and other resources for those who are caregivers. That's about the only way things might improve.

It's time to seek - and accept help - from outside your household in some manner, to take some of the pressure off you. If your spouse is absolutely unwilling to cooperate to improve things, then it's time to focus on yourself and your child. Honestly - despite your partner's illness, it's an excuse, not a justification, on their part. It would be reasonable to seek help from a domestic violence agency.

If your partner is unable to reliably and safely care for your child, then you request supervised visits only, if it comes to that.
posted by stormyteal at 12:25 PM on August 6, 2022 [9 favorites]

This sounds so terrible. You clearly need more hands on deck. Can you reach out to your parents and your spouse’s parents and ask for help? Consider if you can even make them a team. Like arrange a very serious zoom call with all of them. Be frank about these challenges. Ask for their help and ideas. If spouse’s family can offer respite care, take them up on it. Throw yourself at local disability services. If the parents offer to pay for a regular housekeeping service, meal delivery service, dog walker, take them up on it. I wonder if there’s a local personal chef that could make meals that meet your spouse’s needs which would free you up to make your own meals and stuff for your child. Your spouse is being abusive. The threats of suicide and killing the dog are definite red flags for your safety. Make sure there are no guns in the house. Make sure their doctor is aware of this harmful ideation. If you can rally support from your parents, one option might be a temporary separation. You go home with your child to be cared for by your family (can you work remote?) while you try to get your bearings. Let partner’s family help with care while you are gone. You both need a lot of help right now.
posted by amanda at 12:44 PM on August 6, 2022 [25 favorites]

Best answer: Hey, I relate so hard to your story. My husband had physical health issues that resulted in repeat hospitalizations and major diet changes starting when my daughter was five. Mental illness and hostility came into the mix, including threats of suicide, and I left him when my daughter was nine. He died of suicide two years ago when my daughter was 13.

Our daughter is flourishing. Her grades in school were the worst when we were together and I was trying to manage everything. When we separated and she started getting 100% of my attention in my time, she grew. And when he died, the chaos and unpredictability of living with serious mental illness stopped. While I struggle with grief, she thrives. Amazing.

I left him because I didn’t want her growing up in an environment where verbal abuse is OK. I tell you this story to reassure you that it is sometimes better if kids don’t have two parents if one parent is struggling. And in my case the worst happened and he killed himself. The illness killed him, not me. I don’t feel guilty at all about my choices (it took some therapy to get there).

If there’s one thing I regret about that period of my life where I struggled with caregiving it’s that I didn’t take radical actions sooner to lighten my load. In your case, radical actions might look like a weeks vacation away from him, rehoming your dog, moving in with family so you can cut your work hours (rent out your house if you don’t want to sell), divorce, etc.

I would suggest therapy for you but it’s hard to do just one more thing. Can you take something off your plate to do therapy, such as hiring household help. It’s time to dip into retirement savings or ask family members for money if you have to. What you’re doing is not sustainable.

I’m sorry
posted by shock muppet at 12:52 PM on August 6, 2022 [99 favorites]

I don't think we're at the point where it would be better for my child for us to get divorced, but it's hard to know.

Possibly not, but I think you're really quite close to that point if not past it. Unless things are going to get better in the next year or two, you will need to leave if you want to protect your child.
posted by plonkee at 1:02 PM on August 6, 2022 [4 favorites]

I think you already know where you stand. If you continue in this relationship, you will need to commit to being a caretaker, not a partner. That includes being a caretaker to your partner's emotions, no matter how draining or limiting that might be. You will have to look for the benefits of partnership (emotional support, companionship, presumably physical affection) elsewhere. Because you are married, that will be difficult, possibly against your morals. If so, you may have to simply forgo emotional and physical affection for as long as your spouse is alive.

It can be done, although it's unpleasant at best for everyone involved. Depending on the physical strength and anger levels of the person who is being taken care of, it can be dangerous. When the situation involves children, it becomes exponentially more difficult and harmful, as it warps children's views of the world. However, it can be done.

The question is: Are you willing to make this lifelong commitment for yourself? Are you willing to make this lifelong commitment on your daughter's behalf?

If the answer is no, then divorce is the path forward.
posted by kingdead at 1:12 PM on August 6, 2022

You have been willing to sacrifice yourself almost entirely, and maybe that is noble. But would you ever wish your child to sacrifice their happiness, self, and spirit as you are doing? That is what your spouse will extract from them, if you stay. This is a heartbreaking choice, but you have to make it: will you sacrifice your child to this situation, or not?
posted by Ausamor at 1:14 PM on August 6, 2022 [7 favorites]

First, I'm sorry. This situation sucks for everyone and no one is to blame.

You already recognize that this situation is untenable. If you're not going to get divorced, the path ahead looks like: couples therapy, individual therapy, and an understanding with spouse that they take some responsibilities off your plate - shopping, cooking, cleaning, dog care, whatever they are able to do. Otherwise it's not gonna work. You cannot be expected to be parent, breadwinner, caregiver all at once.
posted by gnutron at 1:17 PM on August 6, 2022 [3 favorites]

How much do your respective parents know about the situation? Siblings (if either of you have them). I ask because maybe an interim step is a trial/temporary separation for 3-6 months.

Perhaps you and your kiddo can move out so you can both be in a less volatile situation. Perhaps your spouse's parents can fill some of the care taking void temporarily. Essentially some space might make the situation much clearer to your spouse that they need to GTST a bit more and not treat you as a punching bag for the stress and upset the illness is taking on them.

You and kiddo can still spend plenty of time with spouse, but you also have the option to be away from the emotional turmoil when needed. You and spouse can take time to be in therapy together and reset the relationship.
posted by brookeb at 1:18 PM on August 6, 2022 [3 favorites]

Best answer: I have in the past made the choice to stay in a relationship much like you're describing, and accept that caretaker would be my role and my own needs would have to be met elsewhere. Things did get much better, after many years and a lot of medical trial and error, and I don't regret that choice. But it was a choice I made only for myself, and it broke me in some ways I'll probably never fully recover from. If there had been a child in the mix I think I would have had to make a different choice. You can't subject your child to this as they get older.

I think you need to talk to the families and figure out at minimum a serious respite plan and more likely a separation.

I'm sorry. I know this is not what you thought it would come to, or what either of you wanted. But I also can't believe it's what your spouse would want for their child if they were fully functional right now.
posted by Stacey at 1:27 PM on August 6, 2022 [10 favorites]

Another option - you’re probably clinically depressed by now. If you have short term disability leave coverage through your job, now would be a great time to take some time off to take care of yourself.
posted by shock muppet at 1:29 PM on August 6, 2022 [4 favorites]

As much as everyone in this question needs therapy, at the moment that might be one more thing to arrange, find time and money for. In the short term, you’ve got to get some things off your plate. Can the dog be rehomed, even temporarily? Can you arrange some services for your disabled partner that would also help you? Housekeeping, SSDI for a little financial relief, etc?
posted by shadygrove at 1:39 PM on August 6, 2022 [1 favorite]

I had a parent with mental health problems, which left them acutely miserable when I was a child (mostly between about four and six). I'm in my forties now and I still have PTSD from this. If I encounter someone having a mental health moment that reminds me of it (on TV or in real life), I have an absolute meltdown.
I'm still glad that my parent was hospitalized during the worst bits so I didn't experience anything even more traumatizing. Even so, our relationship was never the same afterwards.

On behalf of your kid I'd like to say, don't underestimate what they see and how it affects them, even if they're too young to understand. Especially if they're too young to understand.
posted by quacks like a duck at 1:51 PM on August 6, 2022 [20 favorites]

Hey I’m just gonna make a quick small suggestion. You can make the special meals for your partner but still make typical food for yourself and the kid.

You or a chef could batch cook & freeze low-histamine compliant meals. (The freezer stops the histamine growth.)
posted by dog-eared paperback at 2:17 PM on August 6, 2022 [3 favorites]

Quick fixes just to give you some air:

1. Spouse does bedtime alone. You need a break!

2. Hire a nanny for 3 hours a day. During that time makes one meal while entertaining kiddo in a playpen when knives are out (2 - 2.5 hours) and also has a period to hand kiddo off and clean one part of the house (30-60 mins - floors or kitchen or bathroom or trash or general tidy).

3. Freeze more food / come up with simpler recipes that are more convenient.

4. Dog walker. Maybe pay a neighbourhood teen to jog your dog?

You need more childcare / house / food / dog help. This sounds absolutely unsustainable! I really feel for you.
posted by nouvelle-personne at 2:17 PM on August 6, 2022 [1 favorite]

Best answer: The other thing is, I definitely think that you should talk to a therapist. Carve some time out for yourself to talk to somebody once or twice a month. They will be able to know details that you can’t tell us on the Internet, and help you figure it out.

For what it’s worth, one of my parents had a physical illness that did cause them to act crazy many times when I was a kid. But that parent is also a narcissist and their narcissism made the situation so many times worse than it had to be. As a child to survive I suppressed my own wants & needs to survive this. It made me self-denying and codependent. I’m fine now, but it took a lot of work to climb out of that mess . It took talking to a therapist as an adult for me to understand & know this.

A professional could help you to understand the full picture of what’s happening and have all the information that you need to make an ethical & practical choice.

Best of luck!! This really sucks.
posted by dog-eared paperback at 2:27 PM on August 6, 2022

Could your spouse go stay with their parents for a week or two? It sounds like even without their help with the childcare, you’d end up feeling like it’s a lot less work without them around - you could cook/eat/order whatever, not have to tiptoe around their feelings, etc. I think it would really help you to have that kind of break. I think it might actually be good for them for them too - to be away from the responsibilities of a home/spouse/child, and just spend a week or two resting and hopefully lowering their stress levels.

And, as other have said, if at all possible, you both should be in individual therapy.
posted by maleficent at 2:28 PM on August 6, 2022 [12 favorites]

If you took out the part about your partner having this syndrome, would you stay? Would you stay with a physically healthy person who is threatening suicide, threatening violence against your pet, who is emotionally abusive? I hope you would not. So that means you also shouldn't stay with an abusive partner who may have an illness causing them extra stress. Because when I read about this disease, and I did not see "being abusive towards loved ones" as a symptom.

It sounds terrible, and I don't mean to diminish what your partner is experiencing. But having any kind of illness, whether physical or mental, does not mean 1) they are allowed to abuse you and 2) you are obligated to stay no matter how they treat you. This isn't a situation where they are a being a bit grumpy for a little while.

In sickness and in health does not mean, "Even if you treat me like shit."

Your child has two parents, including one who is behaving terribly towards you. If you stay, you will be teaching your child to have this same kind of relationship as an adult.

You also said you have don't see a path forward, and I believe you. But there is a path forward, where you are a single parent and your spouse is not living with you. Then you can have a more restful home and focus on taking care of your child and yourself.

It doesn't matter what the illness is. You aren't obligated to be abused. You need to get out. This is a run, don't walk situation. Divorce logistics are always messy. Your partner needs to focus on caring for their health, and you need to focus on caring for yourself and your child. Get out get out get out get out now.
posted by bluedaisy at 2:29 PM on August 6, 2022 [36 favorites]

Just reading what you've written as an impartial bystander who doesn't know you or your spouse, I think you know in your heart what you have to do.

A long-term relationship should be a partnership. That doesn't mean that both parties must contribute exactly 50% to everything, but it does mean that both of them should, to the maximum extent that they are able, contribute equally to the other's well-being. Your spouse isn't a partner. From what you have written, you are contributing 100% and receiving almost nothing in return. This situation is completely untenable, and while it's good for a kid to have two parents, it's even better for a kid to have one parent who demonstrates that sometimes, we need to make hard decisions to protect ourselves. Think about what you are modeling to your child about adult relationships and how we should treat others. No one is entitled to expect another person to silently endure mistreatment with no reprieve in sight, and your child deserves to be taught that when someone is unkind to them, it is acceptable to walk away.

I also think it's important to acknowledge that a person can be ill, mentally or physically, and still behave like an asshole. It is okay to allow another person, even a sick one, to experience the consequences of their behavior. Sometimes, people are not well enough to maintain a relationship.

Also, this,

They say they would die without me, or kill themself without me. I don't believe this is intentional manipulation. I think they believe it to be true. I think it's possible, but it's hard to predict the future.

whether intentional or otherwise (and to be honest, I suspect "otherwise") is categorically unacceptable. It is never, ever okay to burden another person with the possibility that they are somehow "responsible" for your survival in this way. Never. It is not something that you do to a person you claim to love. It's absolutely shitty behavior, just completely unacceptable. Between that and the stuff about killing your dog (seriously, wtf) alone, I think you are more than reasonably justified to walk away. Add in the imbalance of labor, emotional and otherwise, and the fact that you say there "aren't really any good times anymore", and I think it's clear what you have to do.

I am so very sorry that you are going through this. It sounds incredibly difficult in so many ways, and I know firsthand how an abusive relationship makes you question your own value as a human being. I hope that someday, you are able to accept that you don't deserve to be treated this way by anyone, much less anyone who purports to be a partner to you. You are deserving of love from the people you are choosing to surround yourself with, because this is the one chance we get at this "life" thing.

"In sickness and in health" doesn't mean "you must unconditionally accept whatever abuse this person perpetrates".

Lastly, do you have a good friend who might provide a listening ear? I know you've told us a bit of what you're feeling, but I think someone who knows you could provide extremely valuable insight and support. Speaking from experience, your friends want to know about this because they want to help you. Whether it's material support or just a shoulder to cry on, look for the helpers.
posted by easy, lucky, free at 2:32 PM on August 6, 2022 [16 favorites]

Two married parents is not better than divorced parents where one of the parents is threatening to kill the family pet and themselves. This sounds awful for everyone, but I don't think you and your kid are obligated to suffer through this indefinitely.

Spouse needs to be in intensive therapy immediately. While their behavior may be out of their control to a certain extent, I believe a person in their position has an obligation to the people around them to do the work to stop being abusive. Therapy might seem like another thing you'll have to deal with, but maybe you can call in some help from their parents to find a therapist, deal with insurance, etc.

You should seriously consider having your spouse go stay with their parents for awhile. And you should consider permanent separation/divorce. Make a safety plan for yourself, your kid, and your pet.
posted by Mavri at 2:59 PM on August 6, 2022 [6 favorites]

They're like a black hole of rage, despair, and occasionally being mostly okay for a minute. But even okay now feels like the eye of a hurricane; we're still surrounded by the storm.

They yell and scream about minor stuff, and I feel like I'm walking on eggshells around them. I feel like I can barely breathe, barely exist.

They say they would die without me, or kill themself without me. [...] They talk about wanting to kill our dog sometimes

This is a horrible way to live, but I suspect you've lost sight of just how bad it is, because the decline has been gradual. But I'm telling you: THIS IS A HORRIBLE WAY TO LIVE. If there weren't medical factors involved, I think people wouldn't be hesitating to say that you're living in an abusive situation. But you are. It doesn't matter what's causing this situation, how much you care about your spouse, or how much you think illness is to blame for their behavior. In an objective sense, you live within a situation of daily verbal and emotional abuse.

And unfortunately, your child is already being exposed to it. Even if they don't yet have the ability to form explicit memories*, that doesn't mean your child isn't noticing and internalizing the emotional turmoil in the house. (*And if the child is two, explicit memory formation may be coming very soon, sooner than you expect.)

This sort of thing feels especially concerning, as you recognize: I'm the favorite parent (this used to be the opposite when kiddo was a little baby). My spouse is hurt by this. They take it personally and emotionally, and as a result, they're sort of withdrawing more and more. In essence, your spouse is making your child responsible for their feelings, just as they're already doing to you in various ways. And the kid will pick up on this demand, and learn to pacify it. Please believe me that it is excruciating and destructive to grow up this way. As an adult, you can decide whether or not to put up with this sort of thing, but your kid lacks that say. You have to decide on their behalf whether or not they'll be exposed to this constantly, and have it normalized, or whether it'll be something they only have to cope with on occasion.

Under other circumstances I would not continue in a relationship where my partner behaved like this, but context matters.

It does, but your child is also a contextual issue.

And I feel like my top obligation now is to our child.

Trust this feeling.

The best path forward would be if my spouse's health improved and went back to more like the old normal...

I'm sorry to say, that's not going to happen. I'm not claiming it's literally impossible, but it would require such a medical godsend that I think you need to stop treating it as a possible outcome. I know that's really difficult to accept. No person or family wants to feel a sense of medical hopelessness. But MCAS is poorly understood, and your spouse's case sounds very severe. For all practical purposes, their old life is not coming back. If they can't accept that, you must start accepting it on your own, which I know will be deeply painful. If it's at all possible, a personal therapist would be an invaluable support here.

The logistics of divorce would be a mess.

They almost always are, especially with a kid involved. I'm so sorry. A separation or divorce is going to be very difficult to deal with, emotionally and legally and financially. But it's not going to get less difficult to deal with as time passes, once the consequences of your spouse's behavior become more clearly unacceptable for your child's wellbeing (and your own).

I'm just so sorry. You're dealing with a life tragedy, and you're right: there's no way out of this that won't feel horrible. But eventually, there will be room for healing, and room to breathe, room that you can't even imagine right now from within the storm. Be safe, be well, have a safety plan.

P.S. I'm truly not trying to sound paranoid, but it can be dangerous to discuss separation with a person prone to rage, and if you decide to broach the issue, I strongly advise you not to do it casually or without an emergency plan. Don't do it with your child or dog in the house, either. I know you're thinking, "My spouse would never do that," but when someone's behavior is at the point that you're constantly walking on eggshells, you need to take precautions, no matter how much they feel like overkill.
posted by desert outpost at 3:29 PM on August 6, 2022 [34 favorites]

My best friend is literally dying of cancer right now, in pain, unable to do anything she used to, having to let others do almost everything, nauseated and weak as her body breaks down and she struggles with increasing cognitive issues— but she hasn’t said or done even the tiniest cruel thing to her partner (I know this for a fact), her mother, her friends. Illness absolutely does not give anyone a pass for the kind of abusive behavior you are describing, and I guarantee your child is absorbing every bit of that energy. I hope you get away as quickly as possible.
posted by asimplemouse at 3:32 PM on August 6, 2022 [24 favorites]

Best answer: Hi. I have MCAS. It took away my life for ~3 years, but I'm mostly symptom free now. Some of my thoughts/experiences below -- I won't comment too much on the interpersonal aspects of this, but please know I've been in a similar situation and I'm so sorry you have to deal with this. None of this is medical advice: I'm not a doctor or an immunologist, just an epidemiologist who obsessively read the literature to figure out how to get better.

I don't know exactly what you've tried, but MCAS is not an entirely hopeless or terminal condition. My symptoms were extreme brain fog, nerve pain, constant headaches, fatigue, nausea, and, of course, getting potentially deadly allergic reactions to almost all foods and becoming a frequent flyer at the ER for anaphylaxis. These days I'm totally functional (~90% back to normal), my diet is back to normal, and I get occasional flareups every few months or so. Some tips, and apologies if you've already tried all these:

1. What did your allergist say? Have you tried biologics? Dupixent was my miracle drug and brought me back to functionality. Xolair is more commonly used, and has worked really well for many. At the very least, oral steroid treatment like prednisone will almost certainly curb the symptoms, it's just a question of whether or not your partner can tolerate the side effects (I was told I'm unusually sensitive to steroids so I didn't see them as a long-term solution, but I found the side effects to be 10x more bearable than living with MCAS. May be worth trying just to get back to normality for a short period.)

2. I was skeptical at first, but the app Curable helped me fix my lingering symptoms by a lot after I got on dupixent. TLDR: both pain and histamine release are mediated by your expectations/emotional state, so things like meditating or stress relief can go a long way. Not to say that the symptoms are psychiatric in origin, but that you can use these "tricks" to get the body to calm down.

3. Food. Have you sorted out what is a trigger and what isn't? If you have an allergist, are they willing to do series of supervised food challenges with you? The game changer for me was when my partner got me an instantpot and I just chucked frozen chicken, frozen veggies, and pasta/rice/potatoes in there 2x a day. All of this stuff I just got in bulk from costco, and cooking fresh food became so much easier.

4. Environment. Have you sorted out what is a trigger and what isn't? I became sensitive to almost all fragrances/skin products, so my partner and I switched to fragrance-free everything. The brand Free & Clear/vanicream helped a lot. An allergy test may also be useful here to see if they have mold/dust mite allergies, etc. For mold, I make sure to keep humidity below 60%, and wear an n95 when washing dishes, cleaning the bathroom, etc. For dustmites, I wash my sheets regularly in hot water + dry in high heat. For stuff that's hard to wash like pillows or duvets, I just toss em in the dryer on high heat for 15mins to kill the dust mites. I also separate between outdoor clothing and indoor clothing to avoid pollen/outdoor allergens. A HEPA filter/air purifier helped too.

5. OTC drugs/supplements. A lot of this is trial and error, and like you mentioned, some drugs will cause issues. For me personally, I was sensitive to generic versions of antihistamines (only brand-name Allegra seemed safe), and flonase gave me the jitters/insomnia. Nasalcrom strangely helped my brain fog + rhinitis by a lot. Fixing vitamin D deficiency can help stabilize mast cells, and helped with my fatigue. But none of these compared to the positive effect biologics/steroids had on my symptoms.

I may be forgetting some things, but I think that's the most of it. MCAS is different for everyone, so I don't know if any of this would work for you, but maybe it can offer some hope? I don't know if you should stay with your spouse or if you should leave. Their words sound extremely harmful, and I'm sorry that it's been so difficult for you. I never said anything like what your spouse has said to you, but I definitely thought those things to myself constantly. I hope things get better for you, your spouse, and your child. Best of luck.
posted by bongerino at 3:49 PM on August 6, 2022 [44 favorites]

I am the more seriously chronically ill partner in my marriage. I recognize all the awful feelings you're describing in your spouse's case. Chronic illness is terrible and depressing (physically and mentally) and honestly can be awful to live with as a patient, but the chronically ill person doesn't have to take it out on their partner. I would recommend therapy for both you and your partner and possibly marriage therapy if you're really not inclined to leave (and aren't already in therapy). But if I were a parent with a young child, I would recognize that the situation was not sustainable and divorce would be on the table. (We did not have kids in large part because I didn't think I could handle parenting.)

I wish you and your family the best.
posted by gentlyepigrams at 3:54 PM on August 6, 2022 [2 favorites]

Best answer: I've been where you are and sympathise totally. It's unimaginably hard, but the hard bit isn't doing all the work, it's not being appreciated or loved.

For me, we went through a lot of counselling, i paid for a lot of nannies to get some time for myself, but the breaking point was finding out that she was lying to me about how bad her condition was, and how she was arranging better treatment for her foster son than our biological ones. So that was that.

Ask yourself whether your partner is doing as much as they reasonably can to hold your relationship together and make your life easier. If so, there's a future
posted by tillsbury at 4:45 PM on August 6, 2022 [4 favorites]

Also we had a dog (her dog) and it would have been a great help to rehome it, but she wasn't interested. Is this an option you want to consider? You need to make some drastic decisions to keep your life as simple and easy as possible otherwise caregiver burnout is a certainty.

Don't be afraid of divorce because your partner couldn't handle it. Divorce is about putting your mask on and looking after your child. Staying together purely because you don't think your partner couldn't cope isn't a good reason to stay together and would lead to worse outcomes for you
posted by tillsbury at 4:51 PM on August 6, 2022 [4 favorites]

Best answer: I haven't read the replies yet so I apologize if this has been said, but speaking as a spoonie (person with chronic illness), inflammation can cause emotional upheaval. Before I understood what was happening, I would have random outbursts. Over time, I came to notice physical symptoms with these suddenly intense emotions. I did some research and the body dumping a bunch of inflammatory cytokines can cause rage, agitation and anxiety.

Over time I've also noticed that when a flare is coming on, I get short with the people I care about, because my body is demanding more energy or is out of my regular amount of energy and I lose the mask of patience and civility I strive to keep wearing.

What I'm trying to say is that emotional shifts can be a direct reflection of underlying physiological processes. I realize that does not make it less challenging. I was able to monitor myself and adjust/increase self care etc when these things clicked into place for me. Maybe your spouse could track it similarly.

I agree that you and your partner both need therapy. Sounds like partner needs some antidepressants also, at least temporarily.

It's easy to wallow when your body doesn't act the way you think it should. (Also, depression is most recently being shown through neuroscience research to be a product of inflammation as well.) But it's not something to take out on your partner. On the contrary I spend most of my time feeling guilty when I am not functioning well and my spouse has to handle more for the family. I'm overly apologetic. I offer to tag in to at least entertain the kid with something that isn't physically strenuous. It's harder with someone as young as two but your partner could send them on a scavenger hunt or see how long it takes them to run to one point in the house and back. Could do crafts. Something.

If I were not able to work or help with parenting or other household tasks, I would not fault my partner for leaving if he needed to. It's a lot. But it sounds like you might feel like it were more manageable if your partner were managing their side of it better emotionally. It's perfectly valid to tell them you can't handle their emotional needs anymore when you're already handling everything else and ask them to take responsibility for finding someone to talk to about all of that. It's very hard to be supportive to someone that is also draining you practically without eventually being overcome by resentment.

It's understandable for chronic illness to cause a pity party for the sufferer from time to time but it's not right for them to expect to lean on you so heavily for that side of things when they lean on you for other stuff.

Also, anti-histamine diet might be helpful. You can prep raw foods ahead of time and partner can eat them raw. Partner can help with the cooking too possibly? I bought a rolling stool to keep in the kitchen so I could cook even if I was too weak to stand.

When you are a caregiver it's hard to fight the dependency increasing unnecessarily sometimes. Things are hard =/ things are impossible. Partner should be empowered to still do whatever they can even if it's difficult, takes longer than "normal" etc. (Probably after they get into therapy as it sounds like they might just lash out right now given that new set of expectations.)

I saw an allergist with immunology as a speciality because I was getting hives so frequently plus the brain fog, fatigue, joint pain, that I wondered if I had MCAS. I did not but she recommended Xyzal as an OTC medication to get the histamine response under control.

If your partner isn't in a support group they need to join one, stat. There's many on Facebook and probably other places. That's where they need to whine and complain and such. You shouldn't be the one doing that.
posted by crunchy potato at 5:20 PM on August 6, 2022 [10 favorites]

You must rehome your dog now. The threat your spouse made is terrifying, and I agree with those who've said you seem to have lost sight of just how bad this is.

Rehoming the dog will also free up a tiny amount of breathing space for you to consider next steps.

If it were me, it would be ultimatum time. The next time they threaten anyone's life, including their own, you leave and take your child.

Threats of suicide, whether sincere or not, are emotionally abusive and you need to protect your child and yourself from this ever present fog of threat.

I had an ex who threatened suicide sometimes as a power play (but it was also credible enough to get me scared, because he had scars from an attempt before I met him). Creating drama and keeping me in a constant high state of alert made him feel powerful. Similar dynamics may be at play here; she may feel powerless due to her illness, and grabbing at anything that makes her feel potent.
posted by Flock of Cynthiabirds at 6:06 PM on August 6, 2022 [3 favorites]

Oh P.S. Document the shit our of their behavior. Write down quotes, times, dates, witnesses. Keep texts or emails. This will help you if you need to wage a custody fight.
posted by Flock of Cynthiabirds at 6:14 PM on August 6, 2022 [6 favorites]

Please help your spouse try to get mental health treatment, if they are at all amenable (this may be something you have to discuss more than once). It sounds a lot like they need some help. Obviously, chronic health conditions often result in depression, but that doesn't mean the depression is untreatable. It is very much necessary sometimes to treat the symptoms and depression is definitely a symptom of many chronic conditions that can need and respond to treatment.

I would also caution that MCAS is quite a new diagnosis and not well understood. I don't think it is established that it is degenerative or associated with early dementia.
posted by ssg at 6:18 PM on August 6, 2022 [9 favorites]

I truly sympathize with you. And your partner. And I want to echo that you basically have 3 full-time jobs now: parenting and taking care of the home, caretaking, and then your job. That would be overwhelming even without the emotional volatility and being subject to their rage. My heart truly goes out to your partner, but they're not coping well and much of this is not okay, even under the circumstances. It feels like you need to find someone to take care of your partner (e.g. their parents at the parents' home or in a separate apartment in your town) so that you can stabilize your daily life at a level that's a bit more sustainable and reset yourself mentally and emotionally a bit. The distance could allow you to reset expectations for how they can treat you. You two could potentially do therapy together. You also need therapy separately if it's at all possible. The suggestion to take some time off is also good -- you don't have access to any paid family leave, do you? (Example) I can hear how worn down and overdrawn you are. If your parents are helpful, maybe they could come out and help you for a bit? I think it would definitely be fair to communicate to the parents that things are really at a breaking point and some intense help is needed now to help reset things and get them stabilized in a more healthy way (whatever that turns out to be). It's really good that you're reaching out for help. Best of luck.
posted by slidell at 8:03 PM on August 6, 2022

Also I just want to add that, I hear you on the "sickness and health" thing, but the reality is that it isn't only up to you. You cannot solve this on your own. Your partner -- chronic illness and the adjustment to the limitations it brings is painful and heartbreaking, I'm so sorry they're going through this -- but they need some intensive help, and they need to find any way to shield you from their rage. A reset or influx of parental help could help be a wake-up call and or give you the resources you need to stabilize things. But ultimately, if they can't or won't pull out of the emotional tailspin they're in ... you can't ride it with them all the way down. That's what I mean with, it's not all up to you. You "hanging in there" with them is not enough so please treasure and heed your internal voice that speaks out of concern for you and your child and don't subjugate that voice to the idea that your spouse's health must come first. Given that a child is in the picture, you can't let your child or yourself go down with the ship. Do whatever you can to start seeing what choices and responsibility your spouse has despite the situation and to understand that their future and yours might be on different trajectories. Hopefully not but you can't control it.
posted by slidell at 8:16 PM on August 6, 2022 [1 favorite]

In addition to the excellent advice above, please tell both sets of parents what's happening in detail so they can help you more: it sounds like they could maybe come more often to help take care of everyone and ease your burden. If I were either of your parents or a close family member, I'd want to be there to help you, your partner, and especially your child. I'm so sorry it's gotten so incredibly hard, and it is clear that you are being a rock star at dealing with everything. You deserve support and a chance to catch your breath before making any major decisions if you don't feel ready quite yet.
posted by smorgasbord at 8:22 PM on August 6, 2022 [4 favorites]

Best answer: So I'm the disabled partner to a more abled spouse. And I won't lie, it's hard for both of us. It's generally harder on me. But there have been times were I was not a good partner. I was very unwell and was dealing with severe mental health strain (mostly from medication and other stressors that overwhelmed my ability to cope and think rationally.)

I was very depressed. Thankfully, this was a short period. However, I can say that during all of it, I still really fucking tried. I was seeking medical care. I was spending hours researching. I was seeing a therapist. I was writing. And while I was very depressed, and angry, and unable to cope and didn't treat my partner the best, I didn't do the things you're dealing with.

Thankfully, I figured out a lot of it medically. I'm still very, very sick. But my emotions have returned to reality. But it's not an excuse.

This is a situation that needs serious intervention. There may be a medical reason for the depression in addition to the situational depression and anger. But your spouse needs help. And YOU need help. And your kid needs help. And no one should be standing around being abused. This goes beyond "having a tough time." It's not an excuse to lean into abuse.

The illness is no one's fault, but it does NOT excuse abusive behavior. Let that sink in. It's not a free ticket to treat people terribly.

I agree with the above, a partnership is contributing equally based on everyone's capacity. I am thankfully in a much better place. And I've had to be there for my spouse in turn and during times that he has not been the best partner. I do my very best to accommodate his needs as he does for mine. It's not all one or the other.

In sickness and in health means that he takes me to appointments, cares for me when I'm unable, does the shopping, and works full time. I handle the finances, house management, and anything organizational. I still care for him when he's sick as well. It means supporting when we each need support, not an excuse to put up with abuse or for one partner to take advantage.

You are not in a situation of compromise and teamwork here. I don't have exact recommendations, but people above do. At least reach out to SOMEONE for support and direction. But as a disabled person, who lived with an abusive (and disabled) parent, I give you permission to leave an an abusive situation. If not for you, then for your child. That's not what your vows are for.
posted by Crystalinne at 8:42 PM on August 6, 2022 [16 favorites]

Please note that OP took great care to obfuscate genders.
posted by cooker girl at 8:47 PM on August 6, 2022 [7 favorites]

One other thought. If I were in your position, whether I stay or go and whether I get help or not, I would mandate stress management training for my partner for the duration of my time cohabitating with them (and as a stipulation of solo parenting time if needed). Yes, mandate. Stress intensifies the symptoms which increases the inflammation that can cause poor emotion regulation. Stress can directly increase the amount of histamine flowing through the body. Partner could feel better if they could reduce the internal ways that the disease process is activated.

Of course that inflammatory response is not an excuse to be abusive. Partner could still choose their words. Even if my cytokines are flooding my body and I feel that wave of intense agitation with hives etc , I am still in control of the things I say. (It might be a debate as to whether that is universally true, but you don't need to take abusive behavior because your partner is sick. Boundaries would help you both.)

So whether it is meditation, gentle yoga, breathing exercises, any practice proven to activate parasympathetic nervous system response might be something you come to them about, ready to hold a strong line. You can couch it in terms of care but I would recommend that you not shield them from the fact that you need this for you as well. This is a thing that they CAN do. When you have chronic illness you can get stuck on what you can't do. It will do them good to practice something they have agency over.

Hiding your discomfort is part of what is draining you and not strictly necessary for your partner. They might be so wrapped up in their own self pity they don't even realize what they are doing.

Many techniques to activate the relaxation response can be done even if you're bedridden so there's really no reason your spouse cannot implement them on a frequent basis until they train their body not to react to everything as a threat.

Incidentally, GABA tends to dampen histamine and yoga is clinically shown to increase GABA so maybe your partner can start there. Yoga for beginners stuck in bed is a thing. Restorative yoga, Hatha yoga and chair yoga would be good search terms to go that route. Box breathing or triangle breathing can activate the parasympathetic nervous system if your partner is not keen on yoga. I'm not aware of it impacting GABA the way yoga does, however.
posted by crunchy potato at 9:50 PM on August 6, 2022 [1 favorite]

I see my, or our, friends much less often.

Then they may be wondering how you're doing or if they can help. I have absolutely been friends with folks in a hard situation like this and I was relieved when they could articulate what they needed. Think about something they could do that would give you breathing room: walk the dog, an hour or two a week of babysitting so you can go to therapy, cooking a healthy meal once a week, etc. They may say no, but they may be so happy that you were willing to ask for something concrete. I know it can be really hard to admit that you need help, but you may be surprised by how willing people are to step up.

If that doesn't work out, there are community organizations that may be able to help: support groups for caretakers, illness-specific support groups for your spouse, dog rescue/volunteer groups for owners experiencing health crises, etc.
posted by annaramma at 10:39 PM on August 6, 2022 [6 favorites]

Best answer: Not reading responses, so maybe this has been said.

I have MCAS. My health has improved from my low. And my low sounds a lot like that. I would be extremely willing to talk to either you or your spouse or both. Not with advice about how to get better, because that’s super individual, but how to ride out this very bad wave. Because it DOES get better. MCAS is incredibly scary and emotionally taxing. Getting on good mental health drugs has been critical for me, and the ones I’m on are actually good for helping keep mast cells together.

I have a huge store of knowledge in the form of scientific papers that I would be happy to share, and some thoughts about therapies that worked for me (like ice packs, so many ice packs) that doctors aren’t aware of but that people in the mastie community know about. I would also be very willing to share all the communities I’m in, and particularly the ones that gave me hope that I COULD get this under control. Some are real bad dark holes that made me flare just from stress.

I just want you to know that recovery is possible, there are lots of us out there that aren’t “well” but are stable - both physically and emotionally - and able to maintain. I know it’s overwhelming and terrifying.

Reach out by memail, I would be happy to share my email, messenger, phone number for texting, whatever is easy for getting some support. Because truly it’s a bear of an illness and having people who understand and have been there and come out on the other side has been critical to my recovery. It is not an inevitable downward slide, and breaking that thinking was one of the things that helped me get stable. This disease feeds on stress and cutting off the supply from ruminating on “degenerative” was incredibly hard but necessary.

Y’all are not alone, and this awful most awful phase won’t last forever.
posted by Bottlecap at 11:42 PM on August 6, 2022 [16 favorites]

Best answer: Something that I think is CRITICAL to understanding MCAS and management inside a family is that mast cells dump adrenaline into your system when they degranulate. Anyone who is being flooded constantly by adrenaline from a physical source is under an unbelievable amount of pressure and stress that is barely comprehensible from the outside. It’s the body trying to save you from dying from an allergic reaction, but it’s freaking fucking AWFUL. And the further disregulated your system is, the more the mast cell cascade continues.

Living with someone having a constant unrelenting panic attack is hard. It’s even harder to be on the inside. Guided biofeedback therapy to help me put a stop to the cycle alongside medication to stop the panic attack made everything a lot more bearable for everyone. I tried to skim the answers above, but could feel the cascade start from the amount of ... well. Don’t show your spouse this thread. It took practice for me to stop self harming by letting things escalate by reading things I shouldn’t or taking on stress. It takes constant practice, especially with the Everything of it all right now.

But also, just … the things people say while having a panic attack reflect on their most terrified thoughts. They’re verbalized intrusive thoughts and stigmatized heavily. Never getting a break from your body physically dumping adrenaline into your system is incredibly taxing in terms of keeping intrusive thoughts on the inside, but it doesn’t make you any more likely to act on them than anyone else who has intrusive thoughts.

Finding someone who is a competent therapist for this special need is hard, and I’ll just reiterate my offer of help. I only see my person once a month (and by telehealth, even!) and it’s enough to be effective. Living inside a panic attack is something your spouse needs help with ASAP, and none of my specialists knew that adrenaline was part of the MCAS picture.
posted by Bottlecap at 12:01 AM on August 7, 2022 [9 favorites]

Response by poster: Thanks, everyone. All the comments are extremely helpful (I cried reading them), I'll give them all aot of thought, and I welcome any more.

To respond to just a couple things, my spouse has seen both a therapist and psychiatrist for a long time and is on (currently changing) antidepressants. I've never seen a therapist and don't feel like I have have depression, but I'll work on scheduling an appointment for myself because it seems like it would help me no matter what.

I don't think I could rehome my dog, nor do I think my spouse would actually hurt it, although I understand why this is concerning.

I don't think my spouse's medical condition excuses poor behavior, even if it helps explain it. But I can't help but feel it's relevant, in part because it's possible it could be much better managed with time and more experimentation with treatment.

I think my first step may be to look for a therapist. I know I need better boundaries, somehow, at the very least (and perhaps much more). I'm sure I will continue to revisit these responses, and again, I really appreciate them all.
posted by J. Wilson at 6:59 AM on August 7, 2022 [15 favorites]

I wonder if it would be useful to disentangle two things:
1) Does the relationship continue?
2) What do you need to keep you and your child safe?
#1 is related to the long-term health and status of the relationship, e.g., whether your spouse's behavior results from their illness or whether they have underlying aggression/control/narcissism that the illness is exacerbating, what separation looks like, etc.
#2 is about what you do today. I think today's priority should simply be to find safety in the situation. From how this reads, it looks to me like you and your child living in a different physical space from your partner, where they can get caretaking support from more people than just you and interact with you and your kid on more controlled terms.
On a practical note, #2 may also entail divorce so that your finances are separate and they can qualify for government assistance. Unless things dramatically change, I don't see how you can do this alone in the same space as your spouse.
I recommend addressing #2 before you even think hard about #1. #1 is a big, scary, long-term question that will be hard to think clearly about until #2 is addressed.

Or, to put it differently, can you find more safety without ending the relationship, even if that's it a living arrangement or legal situation that is not traditional? Do you want to try to do this?

Also, one thing I hear is some blame for not being able to do this. It is not you who is failing to succeed, it is the system. The system where you only qualify for government assistance if you're destitute, the system where one person is responsible for caretaking, the system where we have moved away from families who could have provided support and have no social structure to replace them. You are stuck in a horrible situation, and society is failing you.
posted by lab.beetle at 8:45 AM on August 7, 2022 [6 favorites]

One thing therapy can do for you is help you take your power back.

You are a person, worthy of love and respect. You deserve space for hopes, dreams, fun, and rest. You have intrinsic value and are not defined by the service you perform for others. You’re entitled to make hard choices that meet your personal needs, regardless of what people think. You are thoughtful and capable and you can get through this.

You decide what to do with your life. You don’t need anyone telling you how to live your life, including a well-meaning hive mind. It will probably take some time and a few tries to get you to a place where you have power and you can run your life again. A trusted ally will help. Good luck
posted by shock muppet at 12:24 PM on August 7, 2022 [3 favorites]

Honestly, in your place I would look for respite care first, so that you have a few guaranteed hours of time out of the house/to yourself. Once you have that in place look for a therapist - how will you go to therapy if you don’t have a free block of time?

Wishing you better times. Reading your question and the answers has been illuminating. Thank you to the MeFites who are willing to share their experiences of chronic illness, it is so generous of you all.
posted by Lawn Beaver at 5:46 PM on August 7, 2022 [7 favorites]

By the way, if you do seek therapy, I'd encourage you to filter for competence in caregiver issues or at least sympathy. In another situation where a key aspect of the stressor was that it starved me for time, I had a therapist who was all "you should exercise, you should cook better food for yourself," and it left me feeling invalidated and angry. You want someone who will GET IT and see that even your time with them was hard to carve out.
posted by slidell at 6:48 PM on August 7, 2022 [9 favorites]

I'm severely ill with an MCAS-like illness

I have a specific suggestion your spouse can try: going on a ZERO biogenic amine* diet. Not low, but zero. This is not something to undertake lightly, it takes a lot of care, but it is perfectly doable.

My personal experience is that exposure to any level of biogenic amines has a devastating effect on my mental state, somewhat similar to how you've described your spouse. This is over and above the things other commenters have mentioned, the general malaise of being very ill and having an over stimulated adrenal system. I have a very specific, acute reaction to biogenic amines in particular that affects my mood. Talking to medical professionals I've consulted (immunologists and trained dieticians) I'm not the only one.

This won't help everyone, it's more common that people have a tolerance of a certain level of biogenic amines. Also I don't exactly have MCAS. But it's what helped me. Given how bad things are for your spouse I thought it might be worth trying.

It is a lot of effort and not much fun but they only need to do it for a few weeks to know if it's going to help.

If you want practical suggestions on how to achieve a zero-biogenic amine diet MeMail me.

* Biogenic amines naturally occurring in food include histamine but also others like tyramine and cadavarine.
posted by riddley at 8:57 PM on August 8, 2022

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