Partner has cancer and struggling with severe burnout

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Planelyspeaking
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23 Jul 2024, 10:47 am

First time posting

My partner has been going through cancer this year and I feel like I've been letting them down due to severe autistic burnout. My burnout was severe enough for me to finally address my many autistic traits and get an official diagnosis a month or so ago after years of suspecting.
I feel like I've been unable to 'rise to the challenge' and be a good partner from being overwhelmed by it all. I've subjected my partner to some bad meltdowns which feels awful since they're the one dealing with actually having cancer and 6 months of chemo. Got a lot of shame for not being better in this time.
I've had a little bit of therapy through this time which has been somewhat helpful but since I'm very new to really embracing being autistic I wanted to reach out here hoping this might be a space to ask for any advice from anyone who might have gone through something similar.
Thanks for reading



babybird
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23 Jul 2024, 10:56 am

That must be really hard for you man

You're doing the right thing in reaching out for help and I hope you get the help you need


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DuckHairback
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23 Jul 2024, 1:04 pm

Yeah, that's super crappy and I'm sorry you're going through it.

I'll tell you two things. Firstly, cancer doesn't just affect the person with cancer. It affects the people around them too. Try to take it easy on yourself.

Secondly, when I had cancer, the last thing I wanted was anyone acting any differently than they would normally. It knocks your world sideways so anything that stays the same is a blessed relief. And that includes partners being annoying or dickish or even needing help. Normality acquires a sort of bliss. People treating you normally becomes wonderful.

So i don't think you need to feel guilty for having meltdowns. Your partner knows you. You're there for them. That's plenty.

Keep going to therapy, keep trying to hold it together, but try also not to give yourself a hard time if it falls apart for a while.

Yes they have the cancer, but it affects you too and you're not expected to not struggle sometimes.

I don't know where you are but in the Uk there's a charity called Macmillan that offers support to anyone affected by cancer (either directly or indirectly). There might be something similar where you are?


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Planelyspeaking
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24 Jul 2024, 12:10 am

TW: self harm

Thanks for the replies, particularly for sharing about experiences going through cancer yourself.

I've been trying to be kind to myself and understanding but it's been difficult. Ive been trying to maintain good routines like exercise and still allowing time for special interests (in my case making music) to self regulate which has helped quite a bit. My partner has shown a lot of patience and kindness with regard to some of my autistic behaviours (she was the one who strongly recommended I seek a diagnosis) but aside from the more obvious and well known things like meltdowns and stimming she hasnt necessarily been seeing some of my other more negative behaviours as being connected with my autism (when i think they definitely are). These are things like burnout, exhaustion and general lack of executive functioning. Also increased miscommunications and confusions when I'm burnt out resulting in conflict which then leads to increased meltdowns. There's some stuff that gets said like 'if I can deal with it you can' which is difficult because I totally agree I should be able to deal with it but sometimes I can't.
My partner has also responded to their cancer sometimes with a lot of anger which can end up being unreasonably directed at me. Since I was in an abusive relationship previous to this one this is incredibly triggering and results in either shutdowns or meltdowns and also some self harm. Even though I can rationalise that some of their anger is a response to the cancer and chemo I'm finding it hard not to internalise it and blame myself for a lot.

Sorry for the long winded response but in a context such as this of dealing with someone else's compex truma and needing to be a carer whilst being autistic would anyone have any specific strategies to recommend particularly to not meltdown and to maintain executive functioning? Although new to the community I agree wholeheartedly with unmasking as much as possible but in this context it can feel like I'm making things worse or about me when it should be about them and their healing.



Planelyspeaking
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24 Jul 2024, 12:16 am

Also specifically in response to the point about liking not being treated too differently, my partner seems to have a fairly different experience. Although she wants to do things as normal as possible and maintain usual life as much as possible she genuinely wants people to acknowledge the cancer and talk about it rather than people ignoring it or treating her like everything's fine and normal. I've taken this on too and am well aware that things aren't normal and that she actually wants to be treated differently.



IsabellaLinton
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24 Jul 2024, 12:33 am

I'm sorry about your partner's cancer and your struggles. My partner and I haven't had cancer but my mother has it in addition to having broken her hip in May. I've been her live-out caregiver and it's bloody exhausting taking her to appointments or just dealing with the funk. My only brother has cancer. My father died from cancer as did several aunts, uncles, and three grandparents. My dear friend who was like a brother my entire life died from cancer just four months ago. My other dear friend is 'no evidence of disease' after five years with their second type of cancer.

My point is that I've been up close and personal with it many, many times so I can appreciate how you're feeling.

Your partner is going to rage and have meltdowns or high / low points just as much as you are. I think open communication is the best way to navigate so they know it's hard on you too. Change of routine is hard enough but now you have a lot of emotional baggage to process as well. Boundaries are important and OK despite the fact you might feel guilty to enforce some. You'll still need time to yourself to rest and recharge, just like she will.

Is your partner open to learning more about your autism and do they know how overwhelmed you're feeling?

There are lots of cancer vloggers you could watch but now you've got me wondering if any of them are tailored to autistic caregivers. I'll take a look and see.

Also does she have a mental health therapist who specialises in medical trauma?


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24 Jul 2024, 12:36 am

Acknowledging you have not been as supportive to your partner as you would like is a step in the right direction.
You are seeking advice? Might I suggest going back re-reading your posts here. It seems you are preoccupied about "you" and barely mention what your partner is going through. Aren't you curious? Her saying she wants things to be normal means she is probably not wanting to share all her anxiety or stress from her cancer with you. Why? because she doesn't want you to be triggered or have a meltdown. She has cancer dude. Man up and focus on her (not you) she is the one who needs urgent and ongoing support.

I understand you are having difficulty coping/keeping it together and I'm not saying it's easy for you with ASD and controlling your own anxiety, but my advice is do everything you can (self-sacrifice) to be 100% supportive. Your meltdowns are not helping her and currently she is having to support you (by remaining stoic and telling you it's ok) and try and keep herself together with her battle with cancer. My heart goes out to her.



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24 Jul 2024, 12:58 am

I'm not sure I agree with you cyberdad. Unless you've been an autistic caregiver of someone with cancer it might be hard for you to appreciate how completely overwhelming it can be. I say that with all due respect.

Everything from EF related to scheduling, bright lights and sensory bombardment in hospitals, emotional lability, rabbit-holing for information, reading body language, making inferences, being intuitive, dealing with social anxiety, and the burden of supporting another person physically, emotionally, and psychologically can be oppressive. It would be especially difficult for someone who is just coming to terms with their ASD diagnosis and their own need for accommodations in daily life.

I don't think it makes the OP selfish or unloving to seek help.


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cyberdad
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24 Jul 2024, 1:06 am

IsabellaLinton wrote:
I'm not sure I agree with you cyberdad. Unless you've been an autistic caregiver of someone with cancer it might be hard for you to appreciate how completely overwhelming it can be. I say that with all due respect.

Everything from EF related to scheduling, bright lights and sensory bombardment in hospitals, emotional lability, rabbit-holing for information, reading body language, making inferences, being intuitive, dealing with social anxiety, and the burden of supporting another person physically, emotionally, and psychologically can be oppressive. It would be especially difficult for someone who is just coming to terms with their ASD diagnosis and their own need for accommodations in daily life.

I don't think it makes the OP selfish or unloving to seek help.


He is looking for advice that self-evidently his therapist (he is seeing) is not giving him. Sometimes you have to be cruel to be kind (in a manner of speaking). I am not calling him selfish, I am saying he needs to think about his what his partner is going through and at least try and be more supportive.

the fact he acknowledges he has a problem in this regard is what I told him is a step in the right direction.



IsabellaLinton
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24 Jul 2024, 1:22 am

There's no evidence that he doesn't care what his partner is going through, or that he's not exerting himself to be supportive. The thread is about the fact he has autistic burnout which is a breakdown of the nervous system that can't be wished away by magical thinking, love for another person, or even therapy (which I'll go out on a limb and bet is CBT).

Burnout is an involuntary clinical illness which can become degenerative and disabling. It's not laziness, lack of effort, or just a struggle to find energy. It means he and his partner each have serious medical conditions even though of course cancer can be terminal, and chemotherapy is horrendous. I'd recommend that he and his partner look into Medical Trauma therapy, Somatic therapy, or even ACT - to be done individually. Couples therapy might help too, for the regular reasons like interpersonal communication and connectedness.


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cyberdad
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24 Jul 2024, 1:46 am

IsabellaLinton wrote:
There's no evidence that he doesn't care what his partner is going through, or that he's not exerting himself to be supportive. The thread is about the fact he has autistic burnout which is a breakdown of the nervous system that can't be wished away by magical thinking, love for another person, or even therapy (which I'll go out on a limb and bet is CBT).

Burnout is an involuntary clinical illness which can become degenerative and disabling. It's not laziness, lack of effort, or just a struggle to find energy. It means he and his partner each have serious medical conditions even though of course cancer can be terminal, and chemotherapy is horrendous. I'd recommend that he and his partner look into Medical Trauma therapy, Somatic therapy, or even ACT - to be done individually. Couples therapy might help too, for the regular reasons like interpersonal communication and connectedness.


I definitely agree he should try another therapist. OP if you are reading, couples therapy (as suggested by Isabella) is probably a good option as you can both get help at the same time.



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24 Jul 2024, 2:05 am

My partner specialises in men with Complex Grief and/or PTSD.
Many of his patients have medical trauma or anticipatory grief.
I wish I could connect him to the OP, but his caseload is full during qualifying hours.
I don't know where the OP is either.


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Planelyspeaking
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24 Jul 2024, 2:23 am

Really appreciate the replies.
To cyberdad I'll say I understand why you would say I need to man up and be there for my partner. All I can say is that's exactly what I've been telling myself all year but ive reached a point of struggle thats led me to reach out here. I've tried very hard to be there and be supportive, I realise I hadnt mentioned that in previous posts. I've been with them at every appointment and every chemo session. I've kept our house spotless and been talking them through everything as much as I can and been as emotionally available and supportive as i can be. I'm grateful to IsabellaLinton for acknowledging the reason I'm reaching out which is that whilst being there for my partner as much as I can I've also struggled with severe burnout which is impacting on my ability to be a support. Its validating to hear discussion of autistic burnout as something that cant be wished away with magical thinking. I'm new to ASD understanding and the language around it.

I'll look into those therapies that were recommended. My therapist has been doing some CBT things which haven't been super helpful honestly and I realise in light of my diagnosis I should seek someone that specialises in neurodiverse patients. My partner also hasnt had therapy aside from a couple of sessions through this time. We had one couples session but when I brought up autism (this was pre diagnosis) the therapist was somewhat dismissive. Maybe since I have an official diagnosis he might be better.



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24 Jul 2024, 4:33 am

Rather than being even harder on yourself, is there some way that you can get at least some partial breaks to recover from your burnout. You mention keeping the house spotless. Can you hire a housekeeper? Is there someone who can share the emotional work of caring for your wife, like other family members or close friends?

I have found that people will generically offer help when someone is going through cancer but they don't understand what is needed or know what to do. If you have people offering help, take them up on it and ask them to do something specific.



Planelyspeaking
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24 Jul 2024, 6:27 am

Thanks bee33, they're actually really helpful suggestions. A housekeeper would take the pressure off a little bit and might give me time to recuperate more. Also a reminder to call in favours from people is good too. We have had many people offer support and I'm often too slow or proud to take them up on it so I need to get better at that. Coincidentally a kind friend actually just dropped around a tray of food for us unprompted which made me very happy and relieved a lot of stress



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24 Jul 2024, 9:36 am

bee33 wrote:
Rather than being even harder on yourself, is there some way that you can get at least some partial breaks to recover from your burnout. You mention keeping the house spotless. Can you hire a housekeeper? Is there someone who can share the emotional work of caring for your wife, like other family members or close friends?

I have found that people will generically offer help when someone is going through cancer but they don't understand what is needed or know what to do. If you have people offering help, take them up on it and ask them to do something specific.



:heart: Great advice.


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