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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dating...

Carrigon

Senior Member
Messages
808
Location
PA, USA
I belong to a disabled dating site. It's awful. I've had everything on there from men who just want sex chat to men from foreign countries who are just looking for an American mealticket. The real men on there who are disabled are either too disabled and need too much help, or they are so much better than I am and absolutely no one I could be with. I just haven't seen anyone I could even remotely be with on there and I've belonged for a few years. Alot of them want travel, lots of travel. I can't. Some of them want a woman to be their kid's new stepmom. I'm not well enough to deal with kids. Some want a breeder, leaves me out, I can't have kids. I just can't find anyone like me. Half dead :p
 
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dmarie4301

Guest
Spitfire, I SO relate to you. I used to get on the internet and get slammed with requests cuz of the blonde hair, but so many guys would say they wanted an athletic woman, etc. Healthy, fun, energetic, etc. I did have 3 guys in a row over a 7 year period that were so good to me, but they didnt knock my socks off and I was much younger and had plenty of time. Now I wish I had one of them back in my life. He was like a husband to me.

Anyway, I read this post from beginning to end tonite, so glad the sun isnt coming up yet. And yes, me too, I sleep best during the morning, Spitfire...til 11 am or so.

But this thread has been SO good for me to read. I relate to all of it. And there are more men on this site than the disabled sites...Ive been checking those sites out....so why dont we have a dating section in here??? If not to at least get a little flirting going on.

Thank you all for sharing.....this is a tough journey and it would be nice to find a snuggle buddy, companion to laugh with, or just take a nap together. Im opening myself up to possibilities of not traveling this road alone anymore. It's not what I had envisioned when I was a little girl.

Donna
 
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_Kim_

Guest
But this thread has been SO good for me to read. I relate to all of it. And there are more men on this site than the disabled sites...Ive been checking those sites out....so why dont we have a dating section in here??? If not to at least get a little flirting going on.

Hi Donna,

I think this thread IS the dating section here. Since none of the forums here are private, I wouldn't feel comfortable with google picking up the posts if we had an actual dating section.

FWIW, there tends to be some fun flirting at times in the chat room. For those of you that haven't ventured in there, I really recommend it. Not just for flirting, but for making friends. I've gotten to know everyone far more personally by hanging out there.
 
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dmarie4301

Guest
Yes, that's true...about it not being private. But maybe Cort could work his magic and do a section for that and make some money off it too! There are more men, here, who are intelligent and funny too, by the way, with CFS than I can find local or on the disabled dating sites. The proportion of men to women seems higher in this forum, anyway, tho many could be married.
 
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dmarie4301

Guest
Ok, you all on this dating post, I joined 4 disabled dating sites. I will share their names in case you might be interested...not many guys in my part of the woods, tho.

http://www.disableddating4u.com/
http://www.whispers4u.com
http://www.lovebyrd.com
http://www.disabledpassions.com

I also looked into the Yahoo group for single cfs/me/fms people, and like I mentioned in a previous post, it's hit or miss there. Many people dont fill out their profiles, so you dont know how old they are or where they live, and they dont put up pics, or they have their profiles blocked. It doesnt work very well, is not efficient. I had an interchange of sorts with the creator of the site, and he said, yeah people wont fill the profiles out, but he doesnt know what to do about that.

Why do people even bother to join a group if they're not going to be upfront about communicating?

Also, I found a few, somewhat atrractive men in the other sites, that arent or dont sound disabled, and I just have to wonder why they are advertising in a disabled site? Wouldnt a healthy person go to matchmaker or something? So I wrote one of them...see if he responds. I wanted to know what his disablity was. He sure didnt sound disabled.

As Spitfire mentioned, maybe they want to control....or I have found in previous relationships with caretakers, the relationship revolves around your illness and they have a need to be needed that way...it's not necessarily a bad thing tho. Unless you get well, then the dynamics fall apart.
 
Messages
85
Dating outside the house is impossible if you can't get out. I once dated someone inside a house for 4 years, so if you can find a friend who wants to live in your house - then bingo.
I must say it is quite wonderful to have someone who realises why you have symptoms, and tolerates them - mainly as they are trapped too. Dating if badly affected it a bit like
living in a luxury prison. Neither of you can get out, so you just 'exist' together.

Looking back to my attempt at having a girlfriend - the highlight of my day together was picking out my lady some sparkly shoes on the web, telling sarcastic jokes or having a bowel movement.

XMRV Dating is going to be even worse than just saying ME or CFS to someone who asks tentatively why you don't work or wear clothes from the Cretaceous period (maybe that's just me).

I'm dreaming of a Phoenix Rising Dating site and we can all chip in with 20 bucks a month to find our dream dates from all around the world. I'm sure everyone on here has been chased around the internet by prospective buyers of 'us' only to wait for that 'drop a clanger' moment of: So what do you do at weekends? Or...... What sports to you do, you are fit and healthy, arent' you? My last boyfriend/girlfriend just say on the couch all day..... sort of thing....

Wouldn't it be cool to have people asking about you, who like you, who actually no all about your disease first? No stress and no worries. Everyone knows we are really sick, and they are sick too - so we accept them and they accept us. There must be lots of people on here who are single, who are so lonely and need someone of the opposite or same sex - and can't 'get' them because we don't know about each other!!!!

Can't see any other possible way that people who are often house bound can interact with 'healthy people' other than a dating site on here.

"I'm dreaming of a Phoenix Rising Dating site and we can all chip in with 20 bucks a month to find our dream dates from all around the world. I'm sure everyone on here has been chased around the internet by prospective buyers of 'us' only to wait for that 'drop a clanger' " - I would deffinatly chip in 4 some thing like that!

But yeah, know what ur talkin bout mate.

Being in sunny brisbane australia, means every ones out and about doing "energy" stuff :ashamed: Apart from the gym half hour 3 times a week i sooooooooooooooooooooooo push myself through, i hardly leave my home.

Sammy
 
Messages
85
Ok, you all on this dating post, I joined 4 disabled dating sites. I will share their names in case you might be interested...not many guys in my part of the woods, tho.

http://www.disableddating4u.com/
http://www.whispers4u.com
http://www.lovebyrd.com
http://www.disabledpassions.com

I also looked into the Yahoo group for single cfs/me/fms people, and like I mentioned in a previous post, it's hit or miss there. Many people dont fill out their profiles, so you dont know how old they are or where they live, and they dont put up pics, or they have their profiles blocked. It doesnt work very well, is not efficient. I had an interchange of sorts with the creator of the site, and he said, yeah people wont fill the profiles out, but he doesnt know what to do about that.

Why do people even bother to join a group if they're not going to be upfront about communicating?

Also, I found a few, somewhat atrractive men in the other sites, that arent or dont sound disabled, and I just have to wonder why they are advertising in a disabled site? Wouldnt a healthy person go to matchmaker or something? So I wrote one of them...see if he responds. I wanted to know what his disablity was. He sure didnt sound disabled.

As Spitfire mentioned, maybe they want to control....or I have found in previous relationships with caretakers, the relationship revolves around your illness and they have a need to be needed that way...it's not necessarily a bad thing tho. Unless you get well, then the dynamics fall apart.


Thanks dmarie4301. Might give those a try now.

Yeah im on - group for single cfs/me/fms people and have found the same problems.

Sammy
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
I think it's important to look for someone who has been humbled by suffering. That makes them realize we're all vulnerable, and tends to lead to compassion. The nature of the suffering doesn't matter as much as finding someone who is not so complacent in their health and luck that they simply have no interest in someone with "problems".

agree with this 100%!
 

SteveRacer

Demon on Wheels
Messages
26
Location
Los Angeles, CA
yeah, I got dumped a couple months ago, and part of the reason was the fatigue... I just didn't give her the attention or interest that she wanted, she thought I didn't care. Of course, I was just too tired to talk or do things. I told her that but it still wasn't enough. Right now I can't think of too many people who would want to deal with this... I'm thinking of looking for a nice rich cougar with a mommy complex who wants to take care of someone. ;)
 

Christopher

Senior Member
Messages
576
Location
Pennsylvania
yeah, I got dumped a couple months ago, and part of the reason was the fatigue... I just didn't give her the attention or interest that she wanted, she thought I didn't care. Of course, I was just too tired to talk or do things. I told her that but it still wasn't enough. Right now I can't think of too many people who would want to deal with this... I'm thinking of looking for a nice rich cougar with a mommy complex who wants to take care of someone. ;)

Obviously not worth your time Steve - now you get to meet someone who is more concerned about your wellbeing rather than the attention she's getting.
 
Messages
2,565
Location
US
Thank you for this thread that I just found and read completely. Many of my thoughts and feelings are echoed here of course. And in the amazing NY Times piece.

There are sayings that you can't be loved until you love yourself. I think that is a big issue for me. Perhaps you can't love another until you love yourself either.

I've struggled with having them understand. For a long time that's what I wanted in a relationship. After a while I decided I don't need that. But I guess I'm back to needing it, to some degree. If they can't believe I am ill, then it feels like they are calling me a liar to my face constantly. Most people are in the middle somewhere. They are sympathetic and believe me when I say I need to sit down, etc. They believe me that yeah my back aches or my head hurts. Yet they believe it's just because I am overly sensitive, because I'm not sleeping right (but the illness is what makes me sleep all screwy) and it does hurt. I don't know if I can stop that from hurting.

I am afraid of sounding like a snob here or, I can't think of the word to describe it. But my biggest problem is not wanting to settle. I should just settle, but I don't know that I can. I have this unbroken spirited part of me I guess. I mean, that might be more heartbreaking to me than anything else, if I just go and be with someone without them being a person I truly love in my heart. I don't quite know how things will turn out for me if I don't "settle". As I get older, I am getting more concerned about my wellbeing. I had a counselor who understood chronic illness and who really wanted to see me get married to a good guy. Someone who would then take care of me for the rest of my life, even if I got worse physically.

I know people who would do that for me (at least it seems so), and they would be positive and happy despite all the hardships we would face. I feel stupid for turning down opportunities, but I don't want to drag someone else down for one thing. It guess it works okay if I save up my energy for my partner, and when they are at work I just rest the whole day and do nothing, but I don't like how that feels, that when they are away I am this fatigued depressed shell of a person, who doesn't do anything on my own. The biggest thing is I want them to be like a soulmate and I guess I am not a whole person and it's probably nearly impossible for me to ever have that feeling with someone. Or, like Michelle said, I am attracted to people who... I don't match with (anymore). I had to learn that the hard way too. One guy is so sweet about my limitations and smart and everything, I wish I could just fall in love. I don't think you can make yourself do that. If so, tell me how.

But the sad truth is, I probably could fall for him if I let myself. I just don't feel like that's right. I am not the kind of personality who wants to go and let a man take care of me financially. I need it, and kind of want it but only because I am sick. So what happens if I go marry this kind person, and one day I get cured. Maybe he spends his money to help me get cured. Maybe I'm a terrible person, but then I would be in a bind. Being cured would change who I am, and I would probably regret that I was married and with someone who is accustomed to the old me. I mean, this guy in my example, would love if I was cured and live would be fun for both of us, it's just... I don't know. I feel like I've missed out all my life and it would be sorta like marrying the first person you ever had sex with and later just wondering what it's like.

I like meeting people online initially. When it's email and IM, people are used to discussing more personal stuff sooner. And it hurts a bit less if they just decide to run away and ignore you, IMO. Since you haven't met them for real yet. Actually I find the best part is that they can learn some of the best things about me in writing. They learn it before or near the time they learn about the negatives. Lessens the impact?

I was in a relationship with someone else who has similar illness to me. Emotionally we could understand each other in that way, but it was horrible overall. It sounds nice that you could both rest in bed, and then when you have energy you can do something together, but it doesn't usually work out that you're on the same schedule IMO. I did hear some couples got on a similar schedule of ups and downs. My experience was more like, when he was well he would insist on needing to go out, and I would have to go despite being tired. Then when he was down, I was totally bored. When I wanted sex, he was too tired.

Anyway, his story has a happy ending. He fell in love and got married and it does make his life better. Not a cure, obviously, but having someone who is your partner in life, by your side, is huge. He is lucky, she is apparently one of the rare ones who can understand and have the right balance.

I find it hard being around someone who is in pain or sad. It's how I am. Somehow I find optimistic people in general. I guess I weed out the others. Some of them think they're optimistic, but they still complain a lot. I'm negative at least half the time. I do better with positive people.

You know, wouldn't that be so wonderful for a partner to have helped us get better? A friend of a friend is a lot better now that she found a great partner. Maybe her fatigue had a lot to do with nutrition, stress, etc? I think love and support does make a huge difference. The right kind of understanding and help. The wrong type obviously makes us worse.

If you are going to date someone ill, possibly better to date someone who is ill or handicapped in a different way from us. They would know how it feels to have to give up some dreams, but probably be more consistent and able to support us. As long as they didn't think their illness was much more real and important than ours, obviously.

I think it's good to have cuddle friends, massage friends, etc as much as possible.

True, dating is hard for healthy people. Some might not have a health condition, but they have other issues. A lot of people start to accept that everyone is going to have something negative, so why not a health condition. So many people have ADD, depression, anxiety, alcoholism, are workaholics, etc.
 
Messages
2,565
Location
US
I would suggest a part-time or long-distance relationship to some of you. If you are taking care of yourself okay, and think you can continue to manage. I have had some of these. A relationship where the other person can't easily relocate because of their job, or doesn't want to relocate for other reasons. And these people are busy with work, kids, family, hobbies so they don't mind only seeing you once a week or once a month. I suggest someone who only lives 1-2 hours away is best. The distance is helpful because they can't come more often or stay too long. I would get to know them a bit online and on the phone, meet them for dinner somewhere, and after that, usually it's just dating at home or maybe going out to eat. If we aren't going out, the guy will usually be glad to bring over some take out or maybe bring groceries. You would look for people who want to keep it more casual and have an "open relationship" or people who understand that you're only looking for limited time, like one night a week.

I really feel that we need CFS communities. Like a senior living community but for CFS. Then yes, you would meet someone compatible by just lounging in your yard or getting food in the cafeteria or at the nearby bank where everybody goes.

I would be glad to set up a dating site for CFS if others will help a little with the ideas and getting word out. Personally I think it should stay small and sorta private. And free (donations gladly accepted though). Of course I am overwhelmed with a huge To Do list but I doubt it would take me much time once I started. It would be worth it even if we just got 2 people to be happy in love... so definitely something I am up for! :)
 
Messages
87
Thanks for writing about all this SickofSickness. I think you have articulated a lot of the challenges really well, iike, not wanting to settle, not feeling evenly matched in a relationship, being attracted to people based on past interests and activities, but then not being able to keep up.
I mentioned this elsewhere, but I'll write about it again because it was so good. I just read a book called My Pet Virus by Shawn Decker. Funny stuff, and inspiring.
Quick summary: dude dying of HIV/AIDS, late 80s early 90s, so pretty much still a guaranteed death sentence at that point. Meets a totally healthy, beautiful woman (who had been competing in Virginia beauty pageants.) They fall in love, get married, and now work on AIDS education together. He's got a funny, snarky sense of humor. Brilliant stuff.
Bottom line for me. The guy was a really sick dude. Some of his story sounds somewhat familiar. He married a model. They're happy.
I'm talking to myself here becuase I have trouble believing some times -- a lot of times. There's a lot of barriers for sure. But often, we add to those barriers by letting our mind come up with all sorts of reasons why a relationship could never work. The biggest challenge for me is learning to stop all the damn thinking and just relate, and see what comes. I've found that often, others can be much more forgiving of myself and my limitations than I am. Not always, but it can happen.
 

Hope123

Senior Member
Messages
1,266
SickofSickness, what you wrote was interesting. Here is my take from it based on my own experience and family/ friends. So take or not take what you will. And I'm being somewhat unfair since I'm picking on a few of your particular points.

Don't make your happiness dependent on any one person (or even persons) - partner, friend, family, or otherwise - and this doesn't apply only to people with CFS. Circumstances change and people change, for better or worse; things happen, like CFS, which are out of our control. Some people have great marriages/ relationships where their partner is supportive/ caring but others are in relationships that might be more stressful than if they were alone by themselves; most relationships likely fall in between these extremes. Marriage isn't the end -- it's a beginning of a new stage; relationships take work. Your partner might be able to take care of you today but what about tomorrow? What if something happens to him/ her and you need to become a caretaker? There are no guarantees in life -- we all know that. Learn to be happy alone; alone doesn't equal loneliness necessairily. There's a line somewhere out there that you can't be happy with someone until you learn to be happy alone.

And I agree with "not settling" but it depends on what "settling" means. Being in a serious relationship with someone when you are not really in love with them (and they believe you to be) is unfair to you and them. Be with someone not because of convenience, proximity, societal pressures (esp. on women), etc. but because you genuinely love them. Obviously, we are limited by our health (and other individual factors whatever they may be) but choose someone you would be with whether or not you have CFS. I know, not an easy thing. I'm in my 30s here and what I've learned is that a lot of external factors don't really matter. Before CFS, I had factor X or Y loosely on my "list," but I tried to keep an open mind and lo and behold, I would end up dating person A or B who didn't have factor X but was a real sweetheart. After CFS, this resonates even more.

Re: not being a "whole" person. You are a "whole" person, just different in your "wholeness" . Don't think yourself less valuable as a human being just because you are ill or as my mom says, " There is nothing shameful about being sick." Someone who loves you will value those aspects of you that you do have and not emphasize the ones you don't.

I agree with Robyn about just "relating" to people and not tying things to expectations too early.

Finally, there are many people in history and currently who have never been married, are divorced, widowed, married much later in life, etc. who have led fascinating fulfilling lives. Not saying this will work for you but it gives a different perspective on things.
 
Messages
2,565
Location
US
Love confuses me, and CFS gets in the way IMO. It colors my view of what love is. Some people, later in life, realize that they never knew what love was (until now, with their current partner), so part of me wishes for that magical fairytale fantasy moment. I'm not sure if it's possible for me because of how understanding CFS has become such an issue. I already don't know what I'm trying to say here.

I do have a sex drive, but it seems different from normal people's. So for a while I decided a companionate-love relationship would be just fine with me. But then I decided it's not okay at all. That's one issue here. Someone else posted a while back about nowadays wishing to have that best friend (companionate) relationship back (and when she was healthy it wasn't enough). What if I pass it up, and I get worse, and am left with nothing.

I guess it's different for me since I've been sick since I was young. Since before I liked boys, lol. Not saying it's harder, I'm sure it's easier in plenty of ways too. But CFS changes every aspect for me.

Sadly I don't think I can be happy alone. Because of CFS. I don't need to be dependant on anyone but I do need company that is understanding and caring.
 

Hope123

Senior Member
Messages
1,266
Well, Sickofsickness, I can see how your perspective is influenced by being sick since you were a child and you didn't have the experience of dating/ mating that maybe other people have. There are many types of love as you alluded to in your post; in fact, the Greeks listed 6 types:

http://www.cyberparent.com/romance/romance-love-styles.htm

However, most people and the media only focus on one type of love, eros, when they talk about romantic love. Eros is important, especially in the beginning, but is it not what sustains relationships for the long-term if that is what you are looking for. Rather it is that companionate love you wrote about instead. (There is certainly nothing wrong with preferring short-term or other types of relationships.) Some people think that the high divorce rate in the US is partly because of people being more interested in the IDEA of romance/ love rather than seeing it for what it truly is. Some scientists have studied the chemicals involved in love/ attachment/ etc. and they find that the chemicals are strongest for the first 3 years, enough to promote reproduction, and then gradually wane; other scientists have thought that is why divorces peak at 3-4 years after marriage (earlier than the 7-year itch!). If this stuff interests you, check out the books written by Dr. Helen Fisher or Dr. John Gottsman, who conduct academic research on this stuff. I myself have not read their books so I might be off a bit; I had an ex-bf who was a scientist/ closet romantic and *he* was the one reading the relationship books, not me!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sadly I don't think I can be happy alone. Because of CFS. I don't need to be dependant on anyone but I do need company that is understanding and caring.

nods. and sometimes on top of those two things you mentioned, we also need to have a distraction (significant other in our lives) so its just not all about CFS/ME.

i do much better having a boyfriend. Its extra important to have another in ones life when one cant just get out and socialise with others.
 
Messages
20
I find it very hard to relate to people now. Having taken that step away from everything i have come back to a point of heealth whereby i can say that society and the people therein are mad. The ambitions and dreams that drive sodiety seem pointless to me, still ill after so many years.

Thinking that everyone is mad makes dating all the harder. I am a fantastic conversationalist for about 3 minutes until my brain decides that it's a bit tired. I'm even a fantastic kisser for 3 minutes before my tongue gets tired. You can see the pattern developing. M.E/CFS just gets in the way.

Many years ago i hurt someone i cared about due to my illness and since then i have pretty much been celebate since then. I just find it less exhausting all round. It's lonlier though.