Dating/relationship advice?

[HTree]

Hi All,
New here so pls bare with me-- Not sure this is the correct place to post about relationships?

I am under the impression that there are not too many twenty/thirty somethings? Specifically, single young folks?

I've had some level of CFIDS (ME if I were from overseas, i'm sure it would be called)-- some form since age 18...(now 30). Yet I have been able to do alot for career, etc on mainly part time basis (with much perseverance, of course). And Fortunately, my social-life did not suffer too too much. I probably was at about a 4-6 level for much of my twenties...(recent set back after infection has brought me to a 3. I hope hope hope not permanently. sigh!).
So I feel blessed that I have had enough energy to have a little fun. Including in the realm of dating. And I've always enjoyed dating-- At least for women, I think it can be alot of fun, ad easy way to meet interesting people!
Now however...in a natural progression, I'm looking for the real deal relationship (I had it once, maybe twice, but wasn't ready yet).
Sadly, now of course, I feel far to sick to actually have any time or energy for a relationship--and any little energy I do have I want to dedicate to my friends. And hope with research/treatment, etc.

But I would never want to give up on the idea of finding a lovely man who might deal with this!

So...My question(s):
ANY ADVICE FROM THE 20-40 crowd or please, wisdom from another generation is welcome!), about :
-when to tell, and WHAT to tell? (is there a formula? On 3rd date, say xyz, that would be nice! )
-Any encouraging stories about finding a partner...despite only having a few hours of energy a day? despite potentially being on disability (at such a young age)?
- i find i talk alot about my past life (which was very full... I feel like this DOES speak to who i am , what I am "all about"--my values, things I care about--even if I can no longer physically participate in those things. But I also find this is misleading-- since I can no longer do most things--talking about (sports, travels--my spirit is still adventurous!)--but yes, it's misleading. Not sure how to maneuver that.
Specifically in dating/getting to know new people.

As I've said-in many ways i've already lived such a full and blessed life-- great education, travel, (start) of career (though i sure could use more time for career! sigh.)- But my concern now is: how is it even POSSIBLE to imagine a relationship working out with this, uncertain illness??

And of course, I used be thankful for attention from men in terms of appearacnes-- I've always *liked the way I look --feel blessed that way too. But now the comments about beauty seem so very -- just irrelevant. It's almost painful. Like many here I think I'd prefer to look as I felt... But I wonder if appearing "glowing and healthy" might actually help with relationships--somehow--rather than confuse?
(trying to stay positive here...)

Ok that's long enough! Apologies, it's late and this is more of a tired ramble than question! But any thoughts--or directions to old posts on the subject, would be most appreciated.

To Hope and health,
Htree
p.s. wow what great Icons....better learn to incorporate to make my ramble-posts more readable!

 

[Athene]

I managed all through my twenties and thirties as you are doing - managing to work most of the time (but with total collapses every few years) and dating pretty much the whole time I felt well enough.

Since I only ever went out to meet men when I felt well, I didn't tell them anything about being ill until we were well and truly a couple. Once we were at the level of confiding, I would mention that I did have this illness that would wax and wane and had left me bedridden on and off for an aggregate total of several years. Then I would explain that was the reason I could never drink alcohol, had a lot of food allergies and intolerances, always had low blood pressure, etc etc - pointing out all the things they had thought were random things or even just quirks of my personality.

The reactions were very varied. Sometimes they listened and said nothing, as if they thought I was better and it would never return, some would be scared it could be catching. But they were all really supportive and understanding and wanted to stay with me and help me. All of them. I have shed friends each time I had a crash, because there were always people who enjoyed seeing "Party Athene" and seemed miffed or even angry with me when I was too ill to socialise and entertain. I soon learned to ditch bloodsuckers like that the moment they started burdening me. But my boyfriends have always stuck my me.

My husband was one of the ones who said nothing and I was a little worried he just didn't understand and would not be able to cope when he saw me get really ill. But with him I have crashed out spectacularly and been non-functional for several years and he has been the most supportive and wonderful of all.

I don't know if this is exactly the type of thing you wanted to know... but anyway, this has been my dating experience.

 

[*GG*]

Hmm, yes quite the dilemna.

I had a girlfriend (I am male) for 5 years, I got tired of dealing with her moods and with my medical condition, I just let it end (she didn't want to help pay for rent, so moved back in with her parents). I feel much better now!

She would not read any of the info I sent her but would spend hours gaming. She also didn't get along with my family and was rather nasty to them, as she was to me on occasion.

I became sick at the age of 33 and have been ill for 8 years now, ouch haven't written that one yet!

GG

PS Looks like you posted in a good section, because getting rid of dead weight has helped me with my lifestyle management.

 

[firefly]

I love your hope tempered with reality attitude, HTree. This story from the NYT made me cry:
www.nytimes.com/2011/05/17/health/views/17cases.html?_r=1&scp=1&sq=melanoma&st=cse
See the video too.
For more inspiration on love inspite of disease google:
Sean Decker (HIV pos man, HIV neg. woman - she was a beauty queen, he was expected to die. Prognosis good now. They travel together and do HIV education.)
Sean Stephenson (the three foot giant -- born with rare genetic disorder. Lives as well as he can, in spite of it.)
Ken Wilber (CFS patient, from Incline Village Outbreak) See his story in Grace and Grit.

I'm in a very similar spot. (Male, career ambitions, disability issues, ecc.)
I've had enough energy to date some these past few months. I tell everything after the first date, if I'm interested. I just lay it all out, xmrv, stamina, hopes and fears. It's scary being vulnerable. So far, with a couple exceptions, the women I've been open with have been far more accepting than I ever thought possible.
The challenge for me is thinking about long term relatioships. That feels more daunting. For the moment, enjoying each day as much as possible.

 

[heapsreal]

We have to look out at our great attributes, most of us with cfs a great in bed, lol.

Im married so i dont know if my advice is relevant, but maybe hold off on telling them u have cfs as most people dont really get it. Maybe after a few dates tell them u get run down quickly and need to rest up some regularly and this will give them time to get to really know you and wait for them to eventually ask if your unwell and then explain your situation then. I know its hard not to winge about aches and pains or feeling crappy but try not too as i think this can be toxic to others and come here to vent with others who know what the situation is like. I try to avoid telling my wife how crappy i feel, but i dont need to tell her she tells me i look crappy and go and lie down. plus a good date can be buying takeaway and snuggling up in front of the tv and watch a DVD and when they get sick of veging, tell them to go for a run or go to the gym and u will be here waiting, this is your chance to power nap for the next dvd, lol.

cheers!!!

 

[HTree]

Thanks so much for your replies! what a wonderful place this is.

It's really interesting: I think most men (male friends I've asked) say along the lines "lay it out there up-front-- but don't share complaints too much, "
vs the women I've asked for advice say ~ "let them get to know you--wait a few dates, or until you know you may like him, than talk about it"

I see the virtues of the former (lay-it all out)-- for me I HATE to feel like i'm "misleading or even lying. I'm such an honest/straightforward person in general-- I'm not good with "ends justify the means" (which is way politics was a bit tough for me
so may be the desire to lay-it-out is really just about "getting it off my chest"-- and that's easier for me, but perhaps not best to start relationships/for the guy.

I stopped working completely this past year, but hope i'll be able to return to just a little part time consulting again in the future (dear god it's too painful to think otherwise!)-- SO specifically question: Should I essentially pretend on first couple dates I' still working??? Does this mean I have to learn to white-lie?? I could say something like "the last contract i worked on was about xyz" and i'm "i between contracts" i suppose.
Perhaps I should ask a friend to help em practice the lies-- for the greater good!

Men (and ladies): would you feel lied- to if posed in the above way?

Sigh, I also writing this realize I think my appearances feel like false-advertising-- "thank you, yes I have full luscious hair" (but no, it's a terrible indicator of fertility and health. Ok, maybe fertility, but certainly not of health nor child-raising ability! sigh yes my final fear--will I be able to raise children...hmm, but that's another topic.

Athene : so interesting, the men I have dated (when not quite this ill)--college sweetheart and a couple others later-- all good relationships-- But all three were pretty supportive--with the attitude "Of course you'll get better-- we'll figure this out!! I'll figure it out-- I'll fix you!" Which is lovely sentiments. But-- they CAN NOT fix this. How to just "be with me"--even if i am never better, even if they are powerless... I think that's a hard one.
How does your husband handle this?
(I know my own brother as well has that helpless feeling--he stays away a abit, because he feels so crazy that he can't DO something to help))

Firefly thanks for the stories! yes, one thing i do well, for the most part, is enjoy the little bits of dating...In some ways I absolutely feel I enjoy such things more than my healthy friends (the appreciation for moments of fun, socializing-- I think I get at least 10x more pleasure out of it than most!

ggingues Hmm...Sounds like you made the right move. Man I do worry about bombarding people with health info-- literature, etc-- But I do think any candidate should read Something. The line between how much to share...at different stages...It's sort of exhausting just to think about! Being single does sound better to me sometimes for that very reason...
Somebody here should make some money selling a "guide to dating and relationships with CFS"- maybe at least for comic relief!

heapsreal Great in bed indeed! ha. yes indeed, "expert snuggler" I am. So the trick is to go to them to be athletic elsewhere? (and try not to be too envious when they go for their run....)
I actually tend to be an under-complainer... Boy sounds wonderful you have a partner who can read you!
Is that because she knew you before you got sick as well?

Well thanks for listening again to my half- questions have ramble! Feels a little narcissistic but-- I see the therapeutic value of this place indeed! Have a good night/morning folks!

 

[Athene]

Hi HTree,

I personally would never tell a lie, eg. pretending you are still able to work when you aren't.
The reason I took my time telling men about my illness was because I simply waited till it cropped up naturally in conversation
eg. Boyfriend would suggest a cycling holiday or something ridiculous for me, so I would explain why the answer was NO and was always going to be NO.
But I wold never say or do anything to mislead.

My husband finds it extremely stressful and upsetting seeing me so ill, and espcially when a really bad patch drags on and on. He is very pragmatic and focuses on taking care of all the pactical things around the house, cooking, cleaning and caring for our son, as well as earning the money. The pressure he is under is enormous and he is an amazingly strong person to cope with all this and do it with such a good grace.
The most important thing is that we try to avoid unburdening ourselves to each other. I think that would drag us both down together, and we really are in a sink or swim situation here.
I know that he has ended up crying at work a few times and I am very glad that he has amazingly supportive colleagues who have become family friends through helping us all. When I need to unburden myself I do it here, with my online friends who understand, or in long phonecalls with my mother who also has CFS.

 

[caledonia]

I don't really have dating advice since I already had a BF when I got sick and he has stuck with me. However, I you can't work work full time for at least a year, you're eligible for Social Security disability and should apply.

 

[heapsreal]

heapsreal Great in bed indeed! ha. yes indeed, "expert snuggler" I am. So the trick is to go to them to be athletic elsewhere? (and try not to be too envious when they go for their run....)
I actually tend to be an under-complainer... Boy sounds wonderful you have a partner who can read you!
Is that because she knew you before you got sick as well?

yes, my wife knew me before i was sick, so knew what i use to be like. I just say hold off on telling someone so they can see what your like so they dont prejudge you, then when they know you and u tell them the whole storie hopefully they appreciate u for who u are not a preconcieved idea of yuppie flu etc etc. before u even tell them u have cfs, they should be getting the picture of your ability to function and hopefully understanding .

cheers!!!

 

[3CFIDS@ourhouse]

Hi, HTree, I won't jump in here with advice, as I was married many years before my husband and I got CFS after exposure to a now-banned pesticide. Our daughter is now 20, has had CFS for 8 years and is too disabled to date, but I am aware of a group started by a PR member for young adults. I believe this is the spot: www.healkick.com/. It might be a good place to get feedback and hear of others' dating experiences. I wish all of you the very best!

 

[invisible ME]

Hi HTree,

I sent you a PM in response.

 

[Hope123]

Htree, I'm a bit older than you but have placed "dating" and similar things somewhat on ice since I need my energy elsewhere to do the things I need to do. I have to say though, even pre-illness, I rarely really dated, instead all the men I had relationships with started out as good friends and I think that same idea can be applied with CFS. Just getting to know men as friends gradually over time takes the pressure off telling them you are sick and so on and so forth. I also keep in mind that if a friend, male or female, can't deal with my illness, they're really not worth my time and energy anyway since this illness is part and parcel of who I am at this moment. I don't need anyone that badly in my life. I am fortunate though to have supportive family, friends who've stuck by me, and new friends with/ without CFS who accept me as I am.

[Interestingly, I live in an area where there are a number of well-off overeducated creative and/or think-out-of-the box types/ stay-at-home moms so when I tell casual acquaintances/ neighbors that "I'm taking time off of work to work on other projects [i.e. my health]", a fair number of people don't blink an eye and just assume I'm one of those independent types working on a project that has to remain confidential for business/ personal purposes.]

I know, at least in US society, aside from one's own desires, there is societal pressure to get the perfect job, get married, buy a house, have kids, donate to a 401k, etc. before you are age XYZ but we know life doesn't really work that way, even if you have perfect health. On the reverse side, not having a boyfriend/ husband/ long-term relationship doesn't mean one can't have a rich meaningful life either, even within the confines of CFS.

In terms of your past vs. present life, you can still be and do things despite the illness although you will have physical/ mental limits others might not have. I too love to travel and can't do much of it now but when I am able, I still try to make it out to try a new restaurant, listen to music from other countries, watch foreign films, read travel literature, talk to friends about their trips. "Travelling" now might not mean going to a foreign country but could be going to a park nearby that I haven't gone to before. I get good enjoyment out of these activities even if it's not the same as pre-illness. One of my mantras is "sick, not dead" -- meaning yes, I am disabled in many ways but I don't have to be dead to what is good/ beautiful in the here and now.

One last anecdote -- I look young for my age and have pretty good skin due primarily to genes and, now, less exposure to the sun [being mostly homebound has to have some advantages!]. One of the rare times I was able to go out, an older woman, an acquaintance of friends who was aware I had CFS, approached me and remarked she wished she had all the time like I did to rest so she too could have my great skin. So I told her, with a smile, something to the effect of 'Yeah, I'll trade you my body and nice skin for your wrinkles but good health.' That sorta stopped her in her tracks although to her credit, later, she did try to understand more what CFS was.

 

[Hope123]

Oh, another thing to consider is to tell (a non-desperate manner!) your family, friends, and acquaintances who know that you have CFS and want someone good for you that you are interested in meeting someone. I haven't done this in the past pre-CFS but have had people set me up just because they thought I would get along well with so-and-so. It didn't really work out for me on the one hand (no chemistry) but on the other, these dates were all with decent, kind, smart people. In some ways, folks who care about you can screen out people that might not take an illness well.

 

[curecfs]

I hate to say this, but the last 3 relationships I've had have taken soooooo much out of me, mentally, physically, and emotionally. Being this ill, you really have to protect yourself from letting the wrong people into your life, and unfortunately you don't always know they're wrong until it is too late. I should've just stayed totally single and focused on myself and getting well instead of dealing with all the drama, stress, and heartache that relationships seem to bring.

I can't really offer advice on your actual questions because I am too sick to date.