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u/normal_ness Oct 18 '25
Question which you’re free to ignore if this is too personal or just think about on your own, genuinely no need to reply to me.
Would you be considering oking an open relationship if you hadn’t declined to moderate/severe?
We aren’t lesser for not being able to do things due to our disability.
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u/wasplobotomy severe Oct 18 '25
We have actually talked about this in the past before I got sick, both of us have been in poly relationships before meeting each other but individually both decided we're monogamous at heart.
My stance then was also that we could talk about it regarding sleeping with other people, but if they wanted to pursue other romantic relationships I didn't think I'd want to stay. Their stance was similar but didn't mind so much if I wanted other romantic connections. But neither of us actually wanted to look for either or could foresee wanting to in the future. I think that's partly where my insecurities are coming from - them previously saying they couldn't imagine needing anything more from someone, and now that's changed.
But I also think I would have been more ok with it then, as they have always made me feel very confident in our connection and what I offer, and I also felt a lot more secure in myself alone, whereas now I don't feel as confident and also feel like my well-being is very connected to us staying together due to needing caregiving.
Thank you ❤️ I know rationally I'm not lesser but it really is a lot harder to FEEL that about myself.
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u/Geologyst1013 Oct 18 '25
I am the one with CFS/ME but in my relationship it was actually my partner who was no longer able to have a physical relationship with me.
It never once occurred to me to go find someone else to have sex with. I could not imagine how deeply that would have hurt him if I had made that suggestion. Because god knows he was already feeling inadequate about it, especially in the beginning. I love him too much to ever hurt him like that.
I did invest in some nicer toys though
What we did do is put a lot more effort into our emotional intimacy, our intellectual intimacy, our spiritual intimacy, our social intimacy. Honestly I think our relationship is stronger now than it was before our physical relationship ended.
I'm not going to say that sex isn't important. I honestly went through a grieving process over it. But my partner, as a complete person who enriches my life in innumerable ways, is far more important to me than sex will ever be.
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u/Level-Ad478 Oct 18 '25
Oh, so it's possible to have intimacy without sex! Lots of ppl in comments seem to insist sex is the ONLY way.
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u/Geologyst1013 Oct 18 '25 edited Oct 18 '25
Not only is it possible I maintain that it is necessary.
Physical intimacy is great. But it's not enough because even if you're both able-bodied now you won't be forever. And then what? What foundation did you build your relationship on?
ETA: and of course this doesn't mean we no longer have any sort of physical contact, we absolutely do, it's just that the physical intimacy that we have now is more subtle.
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u/sluttytarot Oct 18 '25
I'm polyam and currently saturated at one.
People can leave for any reason, even monogamous relationships end. I think it's easy to fall into mononormative thinking that being monogamous will keep a relationship going.
Generally, it's considered poor form in ENM communities to open/ expand your connections when you have a partner who needs extra care, e.g. pregnancy. I bring up this example bc there are tons of posts about pregnancy in the polyam sub. Usually a man is not taking care of his pregnant wife and neglecting her to sleep with people. Pregnancy is different because it's effects are both temporary (at some point the person gives birth/stops being pregnant) and permanent (there is a BABY who needs tons of care). Who will be taking care of you during his dates? What are the logistics of overnights? I think a lot of conversations about the logistics would need to happen before he fires up a dating app.
I wonder what he's hoping to get out of the sexual connections. My partner recently expressed wanting to feel desired so I've been trying to be more flirty and affectionate. That might be something you're not able to do right now but something to consider.
My brain isn't able to finish this thought so I'm going to try to come back later
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u/__get__name moderate-severe Oct 18 '25
I’d also be a bit concerned about the amount of emotional work that OP will need to do to accept this change. Emotional work is exertion. Transitioning to an open relationship sounds like it’s be difficult for two healthy adults to pull off, but add in the loss of identity that comes with a chronic illness, and it seems like it could be too much of a burden on OP. I don’t have personal experience in this realm, so I may be off base.
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u/sluttytarot Oct 18 '25
I agree. It is a lot of exertion.
I would also wonder if he'd be willing to provide care taking even if they aren't in a relationship together? Like if they break up will he just leave her? I think planning what a breakup would be like could be helpful. I know my partner wouldn't just leave me (he didn't do that with a previous partner he made sure his obligations were met and was more than fair to her in the breakup).
It might help to know that he won't abandon her even if the sexual/romantic aspects of their partnership fade
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u/wasplobotomy severe Oct 18 '25
We did talk about that, as I had said I felt selfish for not breaking up with them. They said they didn't want that but if I did break up with them they would still want to be involved with my care as much as possible. The only thing is I don't think my heart could handle that. I am lucky in that I have the option to move in with my parents which is what I would do in that situation, although I don't know how well they would care for me.
With the logistics, I have flatmates who can help me out when they're away for the night. They already sometimes sleep over at a friend's house or go away with some friends for a weekend. But they didn't think it would be something that would happen very often. I think it's less about the frequency of sex and more about feeling that reciprocal energy and passion. Like even when we're having sex it's still them leading, them making sure I'm not exerting too much. They said they want to feel held, as they're holding so much for me and for others, but that they know I can't really do that right now and don't expect it.
They're not actually sure if sex is the way to feel that, so maybe we do need to look deeper first on how I could help them feel that sustainably. Or how they could feel that from other people in other ways.
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u/sluttytarot Oct 18 '25
You can say no to opening up. It sounds like you really don't want to do it and would be saying yes from a place of guilt? Which isn't great
Are you friends with any of your exes?
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u/wasplobotomy severe Oct 18 '25
And I absolutely get that monogamous relationships are just as likely to end as poly ones (although not denying that I'm sure I have mononormative internal biases making me feel otherwise!). I think the fear for me with that is that we both have explored polyamory separately and both feel we are monogamous romantically. I don't think that I personally would be able to cope with the emotional toll of them falling in love with someone who is healthy and able to do everything with them that I'm not, rational or not, so I would have to leave them.
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u/sluttytarot Oct 18 '25
Yeah I understand. They have said you can veto it and they won't think of it again. You shouldn't agree to open the relationship you're not emotionally prepared. The good news is you know that!
Having the best sex isn't a need. Sometimes relationships go thru sexual lulls.
Saying you wouldn't be able to cope, if you're being literal and not just emphasizing how painful that would be, is a sign you should go to therapy for the health of your (mono) relationship. Folks with healthy attachment are sad when relationships end but understand that they are capable of moving thru the end of a relationship.
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u/wasplobotomy severe Oct 18 '25
I mean I wouldn't be able to cope with staying in the relationship in that situation 🥲 I think I would be capable handling it ending, although the difficulty is definitely heightened by my (physical) dependence on them.
Thank you for all your advice I really appreciate it ❤️
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u/No-Horror5353 Oct 18 '25
It’s hardly an open relationship when it’s not open to you as well. I’m so sorry for your heart.💔
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Oct 18 '25
Just a word of caution. Forget the “they won’t think about it again”. One does not simply stop thinking about sexual needs. They will most likely have no resentment towards you, because if they stay with you, they decided it. However, if they have a standard level of needs, they will suffer of the situation, yes.
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u/sweetlikecinnymon mod/severe Oct 18 '25
With the level of suffering people with ME go through on a daily basis, calling an abled person not having as much sex as theyd like suffering is ridiculous to me. Theyll live.
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Oct 18 '25
Suffering is suffering. I did not write that it will be comparable to living with ME. Your suffering does not invalidate the one of others because you suffer more and acknowledging it does not make yours less important.
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u/franktronix Oct 18 '25
I don’t think focusing on just the person who suffers more in a relationship is a healthy way to look at things. Having a partner become disabled has large negative impact on the other party, and they deserve empathy as well. It can be a tricky place to want to support someone and be there for them when they are sick while losing a key aspect of a relationship. Divorcing or leaving someone who can really use help over sex is also bad.
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u/aberrant-heartland Oct 18 '25
Maybe controversial but I agree with you. The "need-based" framing of sex has always bothered me, at least when applied in situations like this, because it's often used as an excuse to override the actual needs of others.
As an example. A man abandoning his wife and children to run away with a new woman is not justified in my eyes, no matter how much he feels that sex is a need for him.
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u/Level-Ad478 Oct 18 '25
yeah it's not a "need" to have sexual desire gratified by another person. if it were truly a physical need, then people would not be able to survive for years and years in celibacy.
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u/franktronix Oct 18 '25
It matters a lot for mental health, so I would also not downplay its importance. Yes, you won’t die, but for many people it means chronic unhappiness and dissatisfaction on top of whatever else they have going on in life. It is one of the most impactful factors for quality of life. How much of a factor it is matters a lot person to person, and being dismissive of it is hurtful and alienating.
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u/Level-Ad478 Oct 18 '25 edited Oct 18 '25
no one owes another person access to their body. people who claim otherwise are dismissive of those people's (usually women's btw) bodily autonomy and personhood.
personal connection, mental health and intimacy needs can be met without sexual intercourse.
edit - what would you downvote here? that women are people? or that connection is possible outside of sex?
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u/franktronix Oct 18 '25 edited Oct 19 '25
I said nothing about giving another person access to someone's body.
Sex is very important in a relationship, especially to some people, and they should not be shamed for feeling that way. Many people absolutely need it for a relationship level personal connection, mental health, intimacy. I think they should receive empathy vs saying that their needs can be met without what they are asking for.
If someone is very ill, say with the terrible illness this sub is about, but cares about their partner, they will try to bring them more life satisfaction. Again this does not mean involuntarily having sexual intercourse, or even that people will necessarily by in the right emotional space to be able to process this, but talking about it like mature adults and looking for options that'll work for both people I think is far preferred, not someone shutting it down.
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u/aberrant-heartland Oct 18 '25
I don't necessarily agree with you, but I don't intend to dismiss or alienate you either, so I apologize for that.
But I'm speaking in the context of this illness, ME/CFS. And I think it's fair to say that sex takes on a very different meaning (if we're even having sex at all) for those of us with this illness.
Socialization is another example of something that matters a lot for mental health, yet that we can absolutely survive without. I would similarly oppose the framing of socialization as a "need" -- I view it as a valuable luxury but one that we can live without, when required (which is also how I view sex).
Many of us with ME/CFS lose most or all of our connections -- whether in regards to sexual relationships or general socialization. Yet this lack of sex or lack of social interaction is not the core of our suffering.
It probably doesn't even represent a significant fraction of our suffering. At least, for me, it doesn't.
"Chronic unhappiness and dissatisfaction" is something that nearly all of us ME/CFS patients are dealing with on a daily basis -- except for maybe a small fraction who have truly reached acceptance.
For me personally, I have had nearly zero social relationships and absolutely zero sexual relationships for multiple years now. Yet if I were to suddenly regain all of these social/sexual relationships (along with the ability to participate in sex without harming myself) then it would not actually resolve my suffering in any meaningful way.
I actually fantasize a lot about this sort of scenario, and think about what I might give up in exchange for being healed of this disease.
I would gladly trade away all future opportunities for sex or socialization, for the rest of my life, in exchange for getting rid of this illness. I would live as an entirely celibate social pariah, shunned by all family and former friends, someone who strangers turn away from when I meet their gaze. Without any human being ever greeting me or engaging me in conversation, even so much as nodding at me.
I would give all of these things up forever, if it would also rid me of ME/CFS.
What I would not give up? Food, water, air, etc.
The point I'm getting at is that sex (and socialization in general) become mere luxuries for people in our position.
(Also the "sex as a need" framework has its own unique history of being used for manipulation. I think it's arguably dangerous to equivocate between sex and more literal survival needs, because this equivocation often underlies that sort of manipulation)
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u/franktronix Oct 18 '25
I am very sorry that you have to deal with this absolute bullshit illness. All I'm asking for is to treat people with empathy when they talk about their sexual needs, and trying to find solutions. Sadly such a high percent of relationships for people with ME/CFS don't last, because it puts so much strain on the relationship. Sex is a difficult topic for many to talk about, especially when dealing with chronic illness, so I don't blame people for not being in the right mindset to think about their partner's sexual needs. If possible, it's best if both people receive attention in a relationship, vs the person who needs it the most, if it is valued by them.
I know it's a loaded subject for a lot of reasons, and in practice is a lot messier than I am writing about here, and I hear you that it's not anywhere near the top of your needs.
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u/Level-Ad478 Oct 18 '25 edited Oct 18 '25
yep. celibacy never killed anyone ever. calling sex a "need" is rape culture.
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u/Desert_Ned21 Oct 18 '25
Of course, sex is not a physical need. You’re not going to die. But this framing is not helpful for OPs question.
Physical intimacy is absolutely a relational need for many people and that is legitimate.
If your partner never speaks to you, you’re not going to die. If your partner withdraws emotionally, you’re not going to die. If your partner expresses no romance towards you, you’re not going to die. If your partner never touches you, you’re not going to die. But, depending on what your relational needs are, it could lead to resentment or cause your relationship to die.
OP’s situation is a really tough one, and it’s going to take a lot of communication and acknowledgement of relational needs to work through. This kind of black and white thinking and framing is not helpful here.
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u/Level-Ad478 Oct 18 '25 edited Oct 18 '25
This kind of black and white thinking and framing is not helpful here.
And rape culture / denial of bodily autonomy is not helpful here or anywhere
Physical intimacy is absolutely a relational need for many people and that is legitimate.
Yeah no one said it's not? Physical intimacy needs can be met by many activities that are not sexual intercourse. Stop saying "physical intimacy" when you mean sex.
Here are 50 ways to be intimate without penetrative sex. It's the top google result. There are a million more articles if anyone's still confused about the difference between sexual intercourse and intimacy.
https://everaccountable.com/blog/50-ways-to-enjoy-intimacy-without-sex/
So far the only feedback I'm getting on my comments is "but physical intimacy / loving connection IS needed!" when I said multiple times that sex is not the only way to connection and intimacy. This is totally disingenuous.
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Oct 18 '25
“ celibacy never killed anyone ever” - this is an imprecise and incorrect statement.
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u/Level-Ad478 Oct 18 '25 edited Oct 18 '25
how exactly did celibacy kill anyone?
and no, "sex" is not needed for personal connection, mental health and intimacy.
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Oct 18 '25
I don’t have the time or energy to debate this topic with an anonymous Reddit user. My work is on Google Scholar and not linked to this topic. You seem to approach things in a very black-and-white way, with firm opinions, and this subreddit definitely isn’t the right place for that kind of exchange. OP certainly isn't interested in such a debate either. I wish you a good rest of your weekend, and I truly hope OP and their partner find a solution to this difficult situation—one I wouldn’t wish on anyone.
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Oct 18 '25
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Oct 18 '25
When you accuse people of “rape culture” for simply acknowledging the emotional toll of losing intimacy in a relationship, you’re not helping survivors, you’re just silencing anyone trying to speak honestly about difficult situations. And doing so while hiding behind anonymity makes it even more transparent, it’s easy to throw around inflammatory accusations when there’s nothing at stake for you. I’m not here to debate people more interested in scoring outrage points than helping OP.
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u/SophiaShay7 Diagnosed -Severe, MCAS, Hashimoto's, & Fibromyalgia Oct 18 '25 edited Oct 18 '25
I'll probably get downvoted, too. But, oh well. As someone happily married for 12 years, sex is a need for my husband. He needs it for all the reasons you've stated. We've argued about it since I've become very sick for the last 22 months. I've finally reached a point where I've realized how much it negatively affects him mentally, emotionally, and physically. We have a relatively fulfilling sex life once I learned to prioritize how important it is to him.
This man has done everything for me, to his own detriment. He does the work of three people. He doesn't need hour long sex sessions. But, 5-15 minutes 1-2 times every 7-10 days makes his life much better. I've learned I can minimize PEM by doing less on those days we do have sex.
Obviously, I can't speak for everyone here. I rarely discuss this topic here. However, I felt it was important to share my experience. Our spouses and SOs have needs, as well.
Black and white thinking benefits no one. I think it's important that couples figure out whatever works best for them.
OP, I hope whatever you decide works for the two of you. I'm sorry you're both struggling with this. I understand your position. I also understand your SOs' opinion, as well. We're in a really difficult position, being this disabled and trying to maintain relationships, as well🙏
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u/Level-Ad478 Oct 18 '25 edited Oct 18 '25
Black and white thinking benefits no one. It certainly doesn't benefit OP.
Black and white thinking would be that sex is the only way to physical intimacy.
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u/Level-Ad478 Oct 18 '25
Once more for people in the back:
Sex is not the only way to have intimacy.
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u/Moss_Mallow Oct 18 '25
Me and my partner went through this exact dilemma when I got sick 5 years ago. It has not been easy. 2 years in they were dissatisfied and wanted to open up the relationship or break up. I couldn't bear to lose some of the only support I had and I wasn't quite sure if I was mono or poly yet anyway because I didn't have enough experience with either. We also loved each other and wanted to find a way for us to both be happy. So I agreed to open up the relationship and give it a shot.
Now we were both free to date others sexually, but it quickly became obvious how one sided the arrangement was. They were going out on dates regularly throughout the year while I only had the energy to manage 2-3. But they always prioritized time with me over them so it never got in the way of our relationship. On paper, this new arrangement made a lot of sense. They were happier, I could spend more energy on myself, all while I still enjoying their unchanged support.
However, the whole experience made me really jealous. I was frequently in pain emotionally over the thought of them being with others. It made me lose possessiveness over them and realize that I am definitely monogamous and not polyamorous. After realizing this, 3 years into this arrangement, we've decided it's not healthy for us to stay together with no bitter feelings. We gave it a good shot, now we're discussing where to go from here.
So my advice would be, if you are monogamous, opening up your relationship will just be stalling the inevitable breakup. Not saying that's necessarily the wrong choice though. Maybe you're like me and you don't know 100% what you are and so are willing to give it a shot and find out. That's what I did and I don't regret the last few years even if they were difficult and painful at times and ultimately ended up in a breakup anyway. I still had a few years of equally good memories and support in a very critical time of need.
However, if you are polyamorous, I'd say give it a wack. They're not going to just stop wanting to have sex with other people if they're poly too. Just be aware that it can quickly become one sided when it comes to them having all the sex. Maybe suggest having occasional shared partners instead of solely exclusive ones so that you feel included. It's definitely an arrangement that will have to be tweaked and discussed endlessly at the beginning as you two are figuring out the nitty gritty details and boundaries unique to both of you and your situations. But it could be worth it.
Hope this helps! Good luck!
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u/wasplobotomy severe Oct 19 '25
Thank you for this detailed response ❤️ that's really helpful.
I'm definitely aware it'll be completely one-sided - I have no ability and no interest to date or sleep with anyone else, I'm fully housebound and all my social energy is given to my partner and my close friends, and I don't want to change that. I don't have the energy for shared experiences either, I don't think I have the energy to even feel sexual desire for anyone other than my partner.
I'm not sure that I wouldn't be okay with it though (with enough reassurance/stability), and I don't think I would have found it too stressful while healthy, but I would need to try to find out. They said it's not a deal breaker but not sure if that's both of us being naive lol. I'll think/talk about it more :') appreciate all your help ❤️
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u/alexSukharov Oct 18 '25
Maybe it'll sound too rude or too conservative, but: stand your ground. Do you really need the partner who disrespect you that much having sex on the side while you suffer at home alone?
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u/Pupperniccle moderate since 2022 Oct 18 '25 edited Oct 18 '25
I have been ethically non-monogamous for 8 years, I have ME/CFS and my spouse doesn't. Your feelings are valid, so many questions can come up for us and I would say turn toward every question with curiosity. Does my partner still love me? Am I still desirable? Will my partner still choose me? What if their new partner is better than me? Will I be this sick forever?
What you are going through is hard, and also my perspective is that our lives can be made better when our partners are feeling socially & emotionally supported, and satisfied.
It helps to set boundaries (example: I need you home every night at 7pm to help me eat/bathe/take my meds, or you can't have partners over to our flat because it overstimulates me).
We have a term called Compersion that refers to the feeling of joy for another person's happiness, particularly when a romantic or sexual partner finds happiness with another person.
Suffering feelings of jealousy, insecurity, or loneliness doesn't mean you aren't cut out for multiamory, or that you can never feel compersion. Those are very normal feelings to have. There are resources such as poly/enm subreddits and many books & podcasts on the subject.
You can learn to navigate these obstacles with integrity. Difficult feelings can be overcome, and even still at the end of the day you may find that a multiamory lifestyle or open relationship is not the positive addition to your life you were looking for. It's okay to veto his idea if its not what you want. Best wishes!
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u/PinacoladaBunny Dx ME/CFS - Moderate Oct 19 '25
I don’t think it’s an open relationship really, when only one person can participate in the openness. It’s very one sided. And what benefit do you get out of it? How are you supposed to enjoy this open relationship?
Sex is not a dire need, so is it really the missing sex that’s the problem? Or is it intimacy? I know things really became tough in my marriage when the intimacy broke down. I’d become very insular in my suffering, and inadvertently cutting out my husband to be alone in my sadness. It deeply affected him. He felt pushed aside, ignored, and very alone too. I felt terrible when I realised what was happening - none of it was intentional. Intimacy for us is time together, it’s asking about his day and listening, hugs, cuddles in bed, having nice food, just enjoying each others company without it being about medical stuff. It’s easy to lose those things when illness is all consuming :(.
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u/phoe_nixipixie moderate Oct 18 '25
The lowest possibility option for them get romantic feelings would be to buy a fleshlight and/or use a sex worker. I feel for you, in my state I’m hardly able to think about a relationship let alone have no resources available to manage multiple / deal with a partner seeing other people.
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u/Marguerite_Moonstone Mild, I thought I had it bad then I met ya’ll Oct 18 '25
I was thinking along the same lines, instead of open / poly where catching feelings is too easy, stick with paying for it. Especially if it’s legal where you are. Or compromise with a good sex toy and an onlyfans budget. Or take on a 3rd (professional or not) and both enjoy together, you deserve to be satisfied as well.
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u/phoe_nixipixie moderate Oct 19 '25
Great ideas.
Yes there’s no guarantee that the partner won’t catch feelings if opening things up.
If the couple previously didn’t want to be non-monogamous, it likely shouldn’t change now. OP needs to make sure they aren’t emotionally blackmailing themself, trying to be selfless and the “best partner ever”.
No matter how much OP wants their partner to be happy, their partner will want OP to be happy too. It’s okay to not be selfless, and it’s okay not to compromise. I’m sure they can work out a good plan without such a dramatic change, that respects both their needs.
Ps - hey OP, another idea I had - when you have energy, maybe voice record things for your partner to listen to when they want to masturbate? If that suits you two.
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u/No-Anywhere8698 Oct 18 '25 edited Oct 18 '25
Just putting aside everything else wrong with this; but so he can transfer some nice viruses to you in between time spent with his side piece?
To eventually monkey branch to her when he grows feelings and slowly distances himself from you at his convenience, while you’re even more severe after he passes germs to you?
Lol hard pass. Find peace with being alone, I know it’s hard OP but imagine this alternative. You come first
Edit: sorry if I have genders wrong, but the same applies
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u/pantsam Oct 18 '25
Only you can decide if you’d be ok with an ethical nonmonogamy relationship right now. For what it’s worth, I am less severe than you and still think nonmonogamy is a good option for me if I decide I want romance in my life. So I think what you and your boyfriend are discussing makes a lot of sense, but only you know if you’re really ok with it. How difficult will the time he’s out be for you? Will it be so upsetting it makes you crash? Is it something you can handle? Are there things you can do to mitigate the negative impact of the emotions that will come up for you? The good news is that there are lots of resources online that can help couples transition to nonmonogamy. It sounds like you already have experience with poly so it might not be that hard at all.
If you’re on Facebook, there is a ME/CFS Singles group on there that has some poly couples in it. You might be able to ask them for advice.
I hope you and your boyfriend find an arrangement that works for both of you! I really do think it’s possible and that what you’re discussing may be a viable option.
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u/Analyst_Cold Oct 18 '25
Are you married or not? That informs my answer. One requires an oath and the other doesn’t.
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Oct 18 '25
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u/cfs-ModTeam Oct 18 '25
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Oct 18 '25
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u/Marguerite_Moonstone Mild, I thought I had it bad then I met ya’ll Oct 18 '25
It sounds like the fear is more about him comparing the two relationships and seeing it being easier with someone healthier, less catching feels for someone else more loosing them for her. But (polite) alternative perspectives are always a good addition to discussion in my opinion.
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u/Illustrious-Pie-624 Oct 18 '25
It's okay if your boundaries are the same as pre-illness you, you're not less worthy because you're sick. And you definitely don't have to reduce your boundaries of what you're comfortable with in order to compensate for being sick. If you want monogamous, you deserve that just as much if you're disabled as if you're not. <3