Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Is it possible to date with moderately severe CFS/ME? Have a relationship?

Discussion in 'Lifestyle Management' started by Lelvina, Aug 26, 2015.

  1. Lelvina

    Lelvina

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    I am a mostly-housebound CFS/ME patient. I have never dated - I started getting CFS symptoms when I was 14-17 years old (I became housebound/bedbound at 20/21).

    I'm now in my 30s, and I'd like to date, maybe have a serious relationship...

    My CFS/ME is fairly stable, and I'm fuctioning at about 20% right now. I haven't ever worked, and I'm mostly housebound.

    Has anyone ever started a relationship, when they're at about 20%-30% functioning? Is it doable? Could anything work?

    I've got a ton of questions running around in my head, including the following:

    What would life really be like, for anyone I dated? Do I need to accept being single my whole life? Has anyone tried this? What are the pitfalls to watch out for? Obviously I need to tell guys very early on, and online is the way to start. I'd love any advice/ feedback/ insight. What would my partner need to know? Are there any specific problems I should watch for? What challanges would we face, and is it possible?

    I'd love any insight, that anyone can give me. Would this situation be fair to any future partners, and what support would they need to make this work? Could a potential partner handle being in a relationship with me? I'd love any feedback about that, or stories.

    Thanks.
     
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  2. Hutan

    Hutan Senior Member

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    Oh this illness sucks @Lelvina. My son got this illness three years ago when he was 13, so this issue lies ahead. Great that you have asked the question.

    Where do you live? If you live in Norway, I think a large percentage of the people on this forum would like to marry you.

    Off topic but related. There was some discussion on another thread here about women keeping the option of having children open by freezing eggs. There's a cost and it's a medical procedure, but it does mean that you can keep the window of opportunity for having children open longer. Long enough perhaps to get well on your own or for some treatment to cure you. The earlier in your 30's you are, the more successful the process of collecting the eggs is.
     
  3. Lelvina

    Lelvina

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    @Hutan Ah, I'm American! Too bad lol.

    I kept putting relationships on hold, hoping I'd get better. I'm past that stage, and I want to live my life now!

    Interesting about the eggs.... I assume kids are out of the question at this point. After over a decade with severe CFS, I've let go of that. But not having a relationship has been eating at me...

    I've run across people who got into a serious relationship before the onset of their illness, and people who are higher functioning who date/ etc, but I don't know how to go about dating at 20%-30%. If that's even realistic.
     
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  4. acer2000

    acer2000 Senior Member

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    I haven't tried, but I have had a hard enough time relating to other people in my life - or more accurately they have a hard time relating to me + my situation. Plus dating takes so much energy so I wonder how I could give any energy to a relationship when I don't really have any for myself? I'd be interested in people's experiences as well.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @Lelvina am not feeling well enough right now to give you all the feedback I would like but I met my husband online so please know it is possible.

    I was not ill when we met, I got severe mono/EBV after we were dating approx 8 mos following a minor surgery, and then I got a second unknown virus two mos after we got married which led very quickly to ME/CFS first mild and now almost three yrs later, very severe, housebound except for Dr appts, cannot walk without wheelchair etc.

    Am tagging two people who might have feedback for you and hope they do not mind @redrachel76 @Misfit Toy

    Best wishes on your journey!
     
  6. Plum

    Plum Senior Member

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    I became seriously ill 8 months after meeting my current partner, I've been ill for 5 years now. I think relationships are hard but doable. A lot depends on the other person. I personally think I spend a lot of my limited energy on my relationship rather than my health but that is my own flaw. I think being really honest about your health and limitations from the start is important and online is probably easier for that.
    Good luck and I hope you meet someone lovely.
     
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  7. Wayne

    Wayne Senior Member

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    Hi @Lelvina,

    I wrote a bit about meeting my current partner of 20 years on a thread entitled:

    Desperate to Know I'm Not Alone

    I too am at about 20-25% functionality, but somehow my partner and I have managed to make it work. It's been challenging at times--for both of us--but our strong foundation has seen us through some difficult times.

    Before we met, when I had thought about meeting someone I might be compatible with, I didn't really think in terms of "dating". The word itself almost makes me a bit apprehensive, because of the stress I associate with trying to "date" while having CFS.

    I thought more in terms of "meeting someone" who I might be compatible with, and gradually get to know over time. That worked well for me, as I was able to approach meeting others with a lot more equanimity than I would have otherwise.

    In my case, i met a woman who belonged to the same spiritual path I was on, so there was an immediate compatibility in that department. Perhaps making efforts to connect with others with a similar spiritual orientation as yourself would be a good starting point.

    You have lots of questions. :) I guess like all things in life, we just need to figure out what the first step is, and then take it one step at a time, learning as we go.

    I admire your resolve in being ready to venture into something new, and quite likely challenging. But isn't that how we improve our lives--by going beyond our comfort zones to find something that will make our lives more fulfilling?

    Best of luck to you! :thumbsup:
     
    Last edited: Aug 27, 2015
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  8. drob31

    drob31 Senior Member

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    I would think it would be a good thing if you find the right person. If they have CFS/ME they could relate more, and if they didn't they could use their higher level of energy to help try different ways to treat it.
     
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  9. redrachel76

    redrachel76 Senior Member

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    I am turning 39. I did not start dating until age 36 because I kept hoping that I would get better. I got ill at 15 - sudden onset.
    I can not work or walk a lot, and eat only a small variety of foods. I have 2-3 days a week where I must stay in bed. When I do go out I only schedule 1 thing per day.
    I don't know whether that qualifies me as 20% function that you describe.

    I have scheduled an appointment with a fertility clinic next month to see if I can have eggs frozen or not. I won't do it if it looks like it will worsen my health.

    I found it terrifying to start dating. But the more I dated, the more it improved my anxiety.. So far I have only managed to get to the 2nd date.

    At first I tried telling the truth outright but it either scared them away, or they didn't understand. Now I say:
    "I am not energetic and have fibromyalgia and food allergies" as a description.
    It seems to work better.
    I don't consider it as lying because CFS and ME are not properly recognized where I live anyway. I really do have FMS and allergies too.
    The trick is to look attractive and work out how to describe your illnes

    I try to date disabled guys as well as healthies. I thought a disabled guy would understand me more. But I found that the majority of disabled guys are either mentally ill or energetic people with cerebral palsy or spinal injuries and seem less compatible.

    I used to think that I had nothing to offer a man. Then a friend said to me:
    "A man is not looking for a dishwasher, a cleaning woman, or a worker, he is looking for someone he can have a connection to. You can still do that."
    That really helped.

    I also take it really slowly.
    For example:
    - I won't subscribe to more than 1 dating site at a time.
    -The moment I feel bad, I stop and rest, weeks, months, days, whatever, even if it means I miss someone that I like..

    I am still a beginner in dating with ME and have a lot to learn.
     
    Last edited: Aug 27, 2015
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  10. Misfit Toy

    Misfit Toy Senior Member

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    @Lelvina -I am soon turning 45. I have no desire to date which describes where I am at with my health. Over the past 6 years, my health has gone downhill so dating seems too difficult when I am sick and when I have a good day, ironically, the last thing I want to do is "ruin" it with a date. I say that because at this age you hear a lot of..."I am going through a divorce and I have to pay child support and she was a bitch and I knew the night before we got married I shouldn't of done it." The whole online thing for me has been traumatic as I have dated nothing but liars...mind you, one or two dates.

    Will he really be the height he said he is? I think I am just too tired of disappointment when I already am so tired.

    Yes, I am jaded. It's very hard putting limited energy into this kind of situation. Perhaps E Harmony is better.

    I even found out a few years after dating this one guy I met online that he had murdered someone a year before we started dating. He was an alcoholic and killed someone through drunk driving. I poured myself into trying to find "someone" to have a relationship with for 6 years and said "F" it. I am done. The white flag goes up.

    Is is possible to meet someone?...sure. But how much energy do you have to kiss frogs? I just don't have it and would rather put my energy into hobbies, friends and trying to get my health back in shape.

    Considering I don't have much energy for cooking sometimes, or even showering until 5 pm, I think dating is unrealistic "for me." And...other times I can be up for going out for 6 hours...it's all over the place for me and trying to educate someone on that is very difficult.

    I do get out and would say my level of energy is above 50%, but the mental energy is lower and I can't deal with the stress of it and having to have a sharp radar to know...is this person a liar, crazy, a good person, etc..that's a lot of the battle and to be honest, I am too ill to care about what they are doing behind the scenes in their life.

    I wish for someone to come over, hang out with me, watch Game of Thrones and movies, or go to the movies with me but I am not up for a full time gig. I like space and this illness makes me want to be alone and not talk a lot and lets face it...dating requires TALKING.

    Children for me are out of the question. I am too old for one and if I am too unwell to take care of myself, it really doesn't make sense to even consider children.

    I think everyone should try it and do what they want. Go for it...I told RedRachel that and it's worth it if it's what you want.

    In the end, the stress and expectations of relationships made me quite ill and almost every dating situation, I had to recover from. Long term dating, that is.

    ps) about pitfalls...one thing that I had a major problem with was...guys who actually like "ill women." Some men like to take care of people, but the problem with that can be...some of them like you sick because they can control you and you are vulnerable. It's a horrible thing to have to think about, but it's also something I learned the hard way. My ex was like this and he is actually who broke the camels back for me. He loved taking care of me...only to keep me hostage at the same time. He liked being, "needed." In turn, he could or tried to control me.

    I also found that dating in the beginning requires like I said, talking, revealing...vulnerabiltiy and sex. Men, at some point, want sex. Especially many men online. They were married, in a lousy relationship and they want someone who will make up for it. Almost every guy I dated from online wanted sex and they wanted it a lot. I could not do this due to energy and having interstitial cystitis. When they realized, "this girl is not going to have sex with me a lot" (more than twice a week) they were out. Not all men are like this, but in my experience with online guys who didn't know me and all they cared about was what I looked like...this was a huge issue.

    Becoming friends first...is the best option...I will do that first, if I date again. FRIENDS.
     
    Last edited: Aug 28, 2015
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  11. msf

    msf Senior Member

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    This is not really on point, but killing someone through drunk driving is not murder, it´s manslaughter.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    I'm in a similar boat, I became ill when I was 15 and now I'm 31. I've dated a bit, but it has never worked out into a serious relationship (despite my wishes). I found the process to be very frustrating/overwhelming at times and I have given up temporarily. But it is difficult to live with the feelings of loneliness.

    As such, I'm not sure how useful my advice is...

    It's definitely possible to date with our illness, but it requires a lot of motivation and inner strength to proceed... There are those who managed to find a great partner after they have become ill, but sadly, this is less common than it should be.

    Not being able bodied, specifically not being able to work, or do the same things as others creates a lot of friction as we have to explain ourselves all the time - and most people simply do not have the capacity to relate, either they are unwilling to put in the effort to understand, or they simply lack empathy.

    Most women I've approached or dated have basically been turned off by the fact that I don't work. It goes against the grain, it is not merely about their own needs, but also the fact that they'd have to explain to others. You know, "tell me about the new person you're dating, what does he do" "He's ill..." "Oh"....

    This leaves certain types of people. Those who truly care and emphasise quality of relationships over status and material goods etc. I've met very few of these people in my life. Then there are the 'fixers', the people who think they can cure/help you and then you'll be the wonderful able-bodied person they imagine...

    In terms of men who are willing to be with women are chronically ill, though it is more socially acceptable for a man to provide materially for an ill woman, it never seems to work out quite that way. The first pitfall is the "fixers" and this is particularly a problem with many men as such men see the world in a somewhat mechanical way and will get frustrated and ultimately leave when you either ignore their suggestions (because you know they don't work), or you try them and they don't work anyway. "Fixers" aren't willing to be with you as you are, but the able-bodied version of you...

    The second pitfall is the warning from @Misfit Toy, there are men who will take advantage/try to manipulate you because you are more vulnerable due to the illness.

    Since we have limited energy, the "brute force" approach, namely dating many people, simply isn't going to work for us.

    There are two real problems, how to meet people and how to determine whether they are compatible, without too much emotional pain once you realise you fell for the wrong person, or just wasted a lot of time and energy.

    The problem with online dating is that the information that people provide is either vague, or simply makes them look good. The impression we might get from someone in person, could be radically different from the impression we get from an online profile. We might over look some people, and give attention to others that we would probably dislike if you met them first in person.

    Another way to meet people is doing activities with shared interests, possibilities include those on meetups.com etc. A benefit, at least what I have found is that you won't feel like you've wasted your time even if you don't meet someone special. The downside is still the awkward questions are they married, will they accept you with your illness etc, but there is really no way of getting around that without asking and finding out over time.

    The other problem is compatibility and the key to determining compatibility, at least once you are dating someone is open communication. To that end, I'd recommend reading this book "Nonviolent Communication: A Language of Life". See also: https://en.wikipedia.org/wiki/Nonviolent_Communication
    It is not a panacea and requires some effort to adopt these communication methods, but I do believe it helps in the long run. I'd suggest introducing these ideas directly and how the other person responds, eg. whether they are open minded or dismissive of will go a long way.
     
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  13. redrachel76

    redrachel76 Senior Member

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    I find meeting single men outside the home is better to using dating websites or anything on the internet.
    It is less scary too.
    It's just a problem to get out with this illness.

    The last one I found outside the house was the man at the cheese counter in the health food shop that I go to every week.

    The problem was that he had 3 kids from his divorce and my parents (who I live with) asked me if he was divorced, then they talked me out of fixing a first date.

    Nevermind, I was feeling rotten that week anyway.

    I figure that if I can not find a husband or longterm partner, then I might go for what a few of my sexless healthy friends have: just a nice older male friend who looks in on them a few times a week and helps them round the house and chats.

    It is a great option for my friends, one is too elderly for sex and the other is in 39 but just doesn't want to have sex.
    But I would really like a marriage, or failing that, sex in a longterm, meaningful relationship
    . I never got to sleep with anyone before because I was even more ill than I am now, as well of being terrified of dating while feeling half dead with bowel problems.

    To @Misfit Toy I would feel exactly the same as you if I had met those men.
     
  14. redrachel76

    redrachel76 Senior Member

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    True, But if we keep trying by dating very slowly, over many years, even at one twentieth the pace of a normal, still ups our chances of meeting someone.
    That's how I try to think about it.
     
  15. Sean

    Sean Senior Member

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    Got sick at 20, in my early 50s now. No relationships or children, nor much of anything else. Had to let all that go to survive. Just dealing with the disease itself has been way too taxing, then add on top the appalling medical-social-cultural prejudice and economic barriers...

    Plus what Snow Leopard said, particularly about the male perspective.

    Not gonna lie. It hurts. A lot sometimes. :(:grumpy::depressed: :cry:

    Happy for those who manage to have any kind of decent relationship in the circumstances, and I wish you all the best. :) :hug: :love: Censored.png

    I do think the situation for us is changing for the better (finally!), and that the younger, or newer, patients in particular have a better chance at these things now.

    Alternatively: Phew! That was a close shave. Just managed to avoid the horrors of matrimony & parenting. :p ;)
     
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  16. L'engle

    L'engle moogle

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    Every time I go out with somebody and it doesn't work it puts me off for a while (months, usually). So meeting the right one is a very slow process. I still don't know if it is the best use of energies but it seems to be a compelling motivation. 'Dating' seems strangely over formal to me. When I was younger I met people and either we were friends, had a physical relationship, or formed a romantic relationship. 'First date, second date' never really came into it. I try to just meet people on that relaxed footing without that 'date' pressure.

    I've mostly been in relationships, so seem to go suddenly between 'single' and 'living as though married' without a real dating game. 'Get comfy then find out if they're crazy...' but it hasn't worked out for me so may not be the best advice. I don't form really deep attachments very quickly but do enjoy building a close connection. Be prepared to bail out when the red flags appear. :)
     
  17. L'engle

    L'engle moogle

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    Just dropped the illness bomb on a new potential friend... wish me luck ;)
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @L'engle Absolute best of luck and please keep us posted! :thumbsup:
     
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  19. SickOfSickness

    SickOfSickness Senior Member

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    I pushed myself in order to date. When you feel attracted to someone you will probably get an adrenaline boost, and you also get a boost in dopamine and oxytocin. In my case, it helped me "push" during the first months of dating someone.

    I ended up dating people who lived at least an hour away, so in between dates I would recover. I didn't pick them that way on purpose but it happened.

    I feel strongly that how you are emotionally and psychologically is more important than physically. I've heard of people with very serious physical limitations who still found a spouse. I mean, finding one after they became disabled. If the person isn't scared off soon after finding out, they develop feelings, and you just work around the physical limitations.

    I think the real difficulty is if the ill person has depression, anxiety, poor self-image, lack of boundaries, feels hopeless about the future, etc. Or side effects from medications, or being so used to being alone that they can't socialize normally. I think you have to look at yourself honestly and go to therapy or get treatment for these things. This is not directed toward anyone in particular! I am just trying to tell people, so they don't learn the hard way.

    Like me. When I am single, I hate it so much, but I have to admit it's easier for me. It sucks, and I struggle to take care of myself, I cry and feel lonely, but it's still easier for me personally. That is just me.

    You can never completely separate the physical from psychological though. For example, talking tires me out and then I get a lot harder to talk with, or if I got tired from something else, like lack of sleep. But some people's personalities are less affected, if that makes sense. I think those people would succeed in dating if they kept trying.
     
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  20. SickOfSickness

    SickOfSickness Senior Member

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    I definitely recommend not getting too close to another person too quickly. Especially before they have a good idea of your limitations.

    Same here. Another hard to learn lesson. It's hard to be patient sometimes, and I would find myself having too low standards sometimes. I really suggest that ill people can't lower their standards. There was a thread at least 2 years ago where the topic came up and I wrote the same.

    Also if I followed the friends first rule, it would get rid of most of the jerks and liars. There are so many of them online. Men and women.
     
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