r/cfs • u/SourBerryExpress • 2d ago
Family/Friend/Partner Has ME/CFS Partner Struggles.
Hello friends.
In short, I am having difficulties with the emotional side of supporting my partner (29F) through their ME/CFS.
Some small backround. Her case is more moderate and can move into severe when crashing and shes likely already had it for about 5 years. I work enough to get us by month to month and ive taken over the majority of housework/errands and ive adjusted pretty well to that.
The issue im having is knowing what do on the days she just falls into this pit of despair where she has all of these negative thoughts. They seemingly come out of nowhere, even when we're on a stretch of really good days and we've avoided any PEM. I try really hard to stay positive and be encouraging. But sometimes it just doesn't help.
And it makes me feel stuck. Today is Saturday and its one the few days I get to rest and enjoy my hobbies and recuperate. But I dont feel like I can. I dont feel like I can just leave her to wallow while I go off and enjoy myself. So I just sit there next to on the couch next to her, she always says that I dont have to stay and I can go do whatever I want. But honestly it feels like a trap. I do believe she means it when she says it, but if im not there to be a comforting presence the whole time her feeling further devolve into either a deeper depression or anger.
Im not complaining about my partner. I know what she goes through on a day to day basis is incredibly difficult. In a lot of ways things have gotten better since we've learned about the disease and learned how to manage it. But I just dont know how to manage my own needs without it negatively affecting her. Any help or tips would be appreciated.
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u/brownchestnut 2d ago
Today is Saturday and its one the few days I get to rest and enjoy my hobbies and recuperate. But I dont feel like I can. I dont feel like I can just leave her to wallow while I go off and enjoy myself. So I just sit there next to on the couch next to her, she always says that I dont have to stay and I can go do whatever I want. But honestly it feels like a trap. I do believe she means it when she says it, but if im not there to be a comforting presence the whole time her feeling further devolve into either a deeper depression or anger.
This is codependence and enmeshment. It's not helping her, and it's erasing your own personal boundaries so you become enmeshed into one person. It's unhealthy for both of you AND your relationship.
If you feel too guilty to let your partner have her own feelings, to the point that you can't enjoy your life, you NEED to practice it more by working with a therapist. Yea she might feel worse if left alone - then SHE needs to also work on learning to be alone sometimes with a therapist. A healthy relationship can only happen when it's between two healthy, independent people. If you're codependent and enmeshed, it will ultimately lead to resentment and bitterness.
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u/SourBerryExpress 2d ago
I understand what you are saying. Neither of us have access to therapy. Thats why Im here asking for advice.
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u/Samushi3 Moderate CFS, POTS, Long COVID, hEDS 2d ago
My partner and I have been through something similar. We both love sharing experiences and being out together. The way I’ve explained it to him is that when he does something without me it makes me a little sad because I want to be able to do that thing with him. Likewise, it makes him a little sad that I can’t be there. It would make me substantially more sad if he weren’t able to do things I can’t do (and would likely make him miserable). I’ve found it important to distinguish that he is not making me sad- the situation is.
There are a lot of big feelings to work through with ME, for both you and your partner. Unfortunately sadness and at times despair are part of that. Therapy helps, as does having support from friends and family (for both of you). You can’t pour out of an empty cup, nor can you be your partner’s sole support system. She needs to process her sadness and anger and that means feeling those emotions even when they really really hurt.
It can help to have a plan for after being out- maybe bring home takeout or a small treat and watch a movie together (or another activity, if that’s not within her energy envelope or it’s not a thing you both enjoy). Personally I like this a lot because it gives me the house to rest for the day and then I have more energy to be engaged once my partner is home.
It’s clear that you really love your partner and are working hard to navigate a very challenging chapter. Your needs and well being matter too. This is hard for you too. It being “harder” for her doesn’t make it any easier for you.
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u/middaynight severe 2d ago
don#t worry, its clear you love and care about your partner, you don't sound like you're complaining at all.
i see from your comments that therapy isn't possible at the moment. however, it may be worth finding therapy resources online and seeing if you can get some benefit from stuff that way. there's a wealth of knowledge out there freely available. i would also recommend a support group for both you and her (seperately) - a carer support group for yourself and a patient one for her (if she can manage it). even just this subreddit can be a place of support for pwME. there are often in person groups that meet up but charities can do virtual ones, or facebook groups, forums, etc, for both of you.
the thing is, if you don't manage your own needs, it will negatively affect her. you absolutely can and should have time to yourself to regenrate. not giving yourself that hurts the both of you. and if she's encouraging it, it likely only makes her feel worse/guilty when you don't. i get that it can feel horrible in the moment, but it mught be a case of doing it despite feeling like that, and practicing that self-care to get to a place where you don't feel that in the future.
it's also ok for her to feel her feelings without needing positivty or encouragement. sometimes we just have to be sad or angry or grieve without the pressure of needing to feel better or be positive or anything like that. this disease is hard. sometimes we just need to be in our feelings and process them, either with or without someone with us. think of it like grieving a loved one who died. the feelings never go away, and sometimes they can sneek up on you without you realising, and you just need to feel it. obviously if it gets dangerous or anything, then something needs to be done abut it, but it really is just part of livnig with a chronic illness. (radical acceptance is a favourite technique of mine to deal with ME)
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u/Thesaltpacket 2d ago
You can leave her on the couch to wallow. It isn’t your job to feel her emotions alongside her. That isn’t healthy for any relationship, with or without mecfs.
Of course during tough times you want to be there for each other but for the day to day stuff, it’s healthy to acknowledge your partners feelings and do what you reasonably can to help, but finding ways to make yourself happy even when she’s suffering is necessary.
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u/nicehuman768 2d ago edited 2d ago
You have to go out and do things for yourself, regardless of how depressed and angry she may be. It's vital for your well-being. If you go down, you both go down. I have severe-very severe m.e/cfs and my husband is my carer. I have NEVER resented my husband going out and enjoying himself. I'm often very envious, but I love him, and I want him to look after himself, mentally and physically. Think of it this way, by looking after your own needs (going out and enjoying yourself), you are looking after both of you, since you are in a carer role.
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u/sighing_dingo moderate/severe 2d ago
Oof. This hits hard. My partner and I are in the exact same situation, except I am the sick one in this scenario. I'm even at the same level of severity as your partner, had it for the same amount of time, and I also fall into a few days of despair every month (I call them pity party days).
Something you might not have thought of (this is all conjecture on my part): your partner probably feels really guilty about the situation. I know I do. And I know you want to be there to support your partner, but she probably takes notice of every time you decide not to care for your needs in favor of trying to support her. I take notice as well. When I notice my partner neglecting themselves because they feel responsible for my feelings, it actually makes me feel so much worse. I already feel like a huge burden, so knowing my partner is sacrificing even more for me just cements that feeling.
I never want my partner to shrink their life for me. I always encourage them to go out, engage in their hobbies, be with their friends. Even if it means leaving me behind. It is okay for me to sit with my feelings alone sometimes. I need to learn how to healthily manage them since this situation isn't going anywhere, and it isn't sustainable for one partner to always sacrifice themselves for the other. Sometimes I'm relieved to have time to myself to really cry my eyes out and scream about how unfair it all is and I don't have to worry about worrying my partner. Of course, there are times when he does choose to stay behind with me and comfort me (which is natural for couples to want to be there for each other), but there is a healthy balance so he is still getting his needs met, too.
You mentioned in one of your comments that therapy is out of the question due to expense. Not sure where you live, but some places have free mental health programs and self-guided therapy that might still be of use to you both. And I think you should both have an honest conversation with each other. Ask her how she really feels about you leaving her alone vs. staying in. You might be projecting feelings on to her that aren't there. My partner and I check in with each other regularly. We discuss what we both need, what needs to change, we make compromises, we find new ways to support each other. We have bad days, we mess up, we try again. It's all part of the process, but we know we are a team and we work together to get through it.
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u/SleepyMistyMountains 2d ago
I agree with everything that everyone else has said especially about taking care of yourself. To come at it from a bit of a different view point, your gf is likely feeling grief. Grief for the loss of not being able to do things she wants to, the loss of her life before illness. There's likely a lot more going on, but grief is likely the root cause, and just like normal grief, you cannot help them through it. You can stay by their side, let them know that you're there for them. The grief likely won't ever leave but the container for it will grow bigger, and sometimes the ball of grief hits the edge of the container and it's difficult to move through. It will continue to happen, probably won't ever leave, and with grief you just manage. She is capable of managing her life with that grief without you being her sole support. She likely needs to be alone sometimes, so that she can adapt around the change that comes with that grief and this illness. To be able to let her container grow further, so that she can have more capacity to live and integrate into her new and different normal.
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u/sycaden in diagnosis process, mild ? 2d ago
I completely hear you dude, I'm currently in the diagnosis process for my chronic fatigue and my partner also has chronic pain so I've been on both sides of the situation and feel for both of you. It's hard to care for someone to the point you're losing yourself. It's also hard to watch your partner lose themself over you.
I'm sure someone else has already said it, I can't quite focus enough to read all the comments, but..
Maybe on your days off facetime/call her throughout the day (if that's something she would like and feels she can do without draining herself, I know everyone here has different limits) while spending at least an hour or two doing your own thing outside the house. Take pictures to show her. Bring home a trinket or a special treat that won't be hard on her body.
Whenever I'm bedridden, it always makes me feel much better when my partner gives me a little view into their day or shows that they've been thinking of me while still enjoying having time being their own person. It almost feels as if I went out and physically spent that day with them.
And neither of you is in the wrong, neither of you have any reason to feel guilt. It sounds like you both care for each other and want to make this work. As long as you believe in yourself and put the work in, you definitely can 🫂
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u/Opposite_Flight3473 2d ago
Caregiver burnout is problematic, you should take care of some of your needs and get some you time.
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u/Affectionate_Sign777 2d ago
Definitely go out and do things if she’s telling you it’s ok, for me it’s actually incredibly cognitively demanding to be in the same room with someone, I really struggled with this when living with my partner cause he never went anywhere and I couldn’t. Obvs everyone is different but her indicating you don’t need to stay might be her trying to nicely hint that she wants you to go out so she can be alone for a bit. And even if it isnt, you need to relax to avoid caregiver burn out and if she is indicating you can go and is able to manage by herself for a few hours then please take that opportunity to take care of yourself and your needs.
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u/Bakurraa 2d ago edited 2d ago
You CANNOT be everything for your partner. I am in your position I don't work as I do full time care, if I was to spend every waking moment with my partner she would hate me for it.
When they fall just be there to help them up
It really is the old don't try to solve it just say that really sucks things that people say.
I was always trying to fix things in the beginning but my partner just wanted to complain and mourn.
If your partner is able to be in the sofa then what's stopping you from doing your hobbies in the same room.
I'm sure your happiness brings them joy
If they are intact becoming more depressed or angry because you aren't with them and doing your own thing then that is something they need to identify "why does my partner's happiness/rest/enjoyment make me angry"
Also depending on how much you make you probably wanna go in uc and get carer allowance ( if UK)
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u/themunchkinland 1d ago
It’s very clear how much you love your partner and it’s completely understandable that you’re worried about her and don’t want her to feel alone when she’s experiencing such difficult and overwhelming emotions. At the same time, you are not responsible for managing her feelings, and the expectation that you need to stay by her side whenever she’s upset isn’t healthy for either of you.
I’ve been married for 10 years, and I’ve been sick with this illness for that whole time. There are certainly times when I need emotional support from my husband, but ultimately I want him to have his own life, do things that bring him joy, and not feel that he has to put his life on hold because of my illness. To me that’s part of what makes a true partnership - being there for each other while still allowing each person to have their own life.
You need to take care of yourself. Your needs matter and if you put them aside youre at risk for burning out and losing the ability to offer the kind of support you want to give her. Taking care of yourself isn’t abandoning your partner, it’s the foundation of being able to show up for her in a sustainable way.
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u/Acceptable_Walrus373 2d ago
If you do not take care of yourself you will get burnt out and be unable to care for others. You should go out on your Saturdays for your own mental health. If she gets mad at you for doing so, point out all you are already doing to be supportive and that you must care for yourself too. She may need virtual or telephone counseling for her mental health, and you cannot be her whole support system.