intersting topic -how do you tell partners about lyme & what's their reaction?
I've just recently started dating someone for 1st time in 5 yrs as have been seriously ill-
I've been on 3 dates with him -i told him about lyme on 1st date as wanted to be open. i said i was still recovering & receiving treatment ~(but didnt tell him how seriously ill i'd been as didnt want to scare him off!) -he seemed to accept it fine -no probs but asked the long term prognosis. -now that's a difficult one! so i replied "unknown but i'm making very good progress & its controllable with abx"
He asked me out on 2nd date & 3rd date -all going well but now he hasnt contacted me for 3 weeks!! -has he realised the reality of dating someone with lyme?
this is so hard for me as i really liked him & i want a social life back again -i'm only 30 & lost most of my 20's years due to lyme.
How have others found dating since having lyme? when is it best to tell partners about lyme?
are we better off dating other lymies?????????? any offers??? i'm blonde, athletic........!!!!!
thanks -hope to hear from anyone with advice
Posts: 47 | From SP | Registered: Oct 2005
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posted
well, lucky you. this is going to sound very sexist...and for that I apologize...but as a male in a somewhat similar situation, I have to tell you that I have often wished I was female. women with lyme can still get guys...but for a man, it's a relationship killer. women simply aren't interested in dating someone who is chronically ill and can barely support themselves.
I am attractive and intelligent, but I have chronic neuroborreliosis. and no one wants that. the single gals who have lyme, who would understand me and my life experiences on a deeper level, they're all {understandably} running after healthy guys who have actual futures.
I have maybe two dates a year.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Vermont_Lymie
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Hi surfbabe,
Just my opinion, but I agree overall with your honesty policy and respect it. I really think that the right person and the right relationship will not be scared away by lyme. My husband had been diagnosed with a chronic condition the day before we met -- and told me so the second time we spoke.
That being said, see how it goes on the first date -- do not mention it first thing if it is out of context!
I hope that doesn't sound too contradictory. I know it is difficult, I have been there, and I know how a chronic disease can begin to define us! Great that you are dating again, it really helps one to feel better!
wishing you good health,
Ella
[ 24. October 2006, 08:59 PM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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posted
Hi Surfbabe, I don't think I've ever posted in general before but I do read the posts and yours caught my eye. Dont loose hope. I got sick when I was 22 and married at 23 and then divorced at 27 due to pressures of this illness. I figured I'd end up alone for the rest of my life because I am and have been so sick. Well I met a man on AOL in 1997, we hit it off right from the start. As things progressed I was ALWAYS open and honest him about my illness and how I usually felt on a daily basis.. When we started getting really serious as in talking marriage I stressed to him that this disease could get better but after all these years it also has the potential to get VERY bad. I even took him to my LLMD I was seeing at the time and had him explaine everything to him and my LLMD told him the same thing. There is no way to tell. Things can get better and things could go very wrong. I wanted this man I was seeing to be fully aware of the seriousness of my health situation.. Well, he married me anyway and has been a wonderful loving supporting partner ever since. So please don't loose hope or heart. The right IS out there for you if you're sick or not. Alot of people men especially can not handle illness but there ARE those who can and you will come upon him.. Hugs. Robyn
Posts: 209 | From South Carolina by the beach | Registered: Jun 2005
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I admire your honesty and it is difficult to date while ill. I'm encouraged that you still want to get out there and that seems like a sign of health to me.
I divorced at 41 and spent 5-6 years before dating. Met the kindest, most incredible man who wasn't scared off by the disease ( undiagnosed but still very ill). He was even more determined to help me once he realized how sick I was (an angel).
We've been married for 4 years now and I'm getting better. There are incredible men out there, like Bruce, and you will find the one who will help you. Keep being honest and he will be drawn to you for that.
Posts: 460 | From Illinois | Registered: Aug 2005
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quote:Originally posted by chroniccosmic: Surfbabe,
I admire your honesty and it is difficult to date while ill. I'm encouraged that you still want to get out there and that seems like a sign of health to me.
I divorced at 41 and spent 5-6 years before dating. Met the kindest, most incredible man who wasn't scared off by the disease ( undiagnosed but still very ill). He was even more determined to help me once he realized how sick I was (an angel).
We've been married for 4 years now and I'm getting better. There are incredible men out there, like Bruce, and you will find the one who will help you. Keep being honest and he will be drawn to you for that.
wow...I'm an incredible man? thanks for the comliment. I wish I could get the local librarian I have a gigantic crush on to come to the same conclusion.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Aniek
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Member # 5374
posted
surfbabe,
I'm a 31 year old single lymie trying to date.
I've got to say, in my experience, men disappearing without a call anytime before date 4 is pretty common place. I think people don't feel they owe an explanation or anything.
As for the Lyme being a factor, did something happen on date 3 that would make you think it was a factor? Were you not feeling well or did you talk about the Lyme?
There could be so many reasons you haven't heard from him. I always wish I could call the guy and have an exit interview so I can figure out what happened.
As for telling people you date about the Lyme, it's a tricky thing. I usually try somewhere in the first 3 dates. I don't normally say anything on the first date, because I'd rather use that date to see if we click, without any other distractions thrown in.
By date, I figure he knows me and he's interested. Now I can let him on the Lyme thing and see how he reacts. Of course, if a guy reacts bad then I don't want him anyway.
But it is finding that perfect balance so you are honest but don't terrify the heck out of him.
I usually tell the guy my main symptom is pain, which I've learned to deal with and that's one reason I do so much yoga. That's all true. But I don't say I sometimes get motor tics.
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Surfbabe, Hi, I'm not sure I can give you any advice but I do know that my illness has caused me to be "dateless" since I got really sick with lyme almost 2 years ago. At first I just wanted to stay alive, then to be able to work again. Those goals have been reached. I am doing very well now, I recently almost started my 2 month symptom-free countdown to go off all abx.(then I realized I'm not quite there yet....)
I'm just about ready to start looking for some kind of social life again. The one thing that concerns me most is that I know for sure that I do NOT want to inadvertantly pass this terrible disease on to an innocent, unsuspecting future partner.
Even if you were to warn them about this possibility,and they thought they understood the risks, etc. they would have no clue about how devastating this disease can be. I guess this fear may hinder my future ability to be "intimate" without feeling guilty about it. There is at least some credible evidence of sexual transmission being reported.
Maybe your suggestion of dating fellow Lymies would be a way around this dilemma. At least they'd understand why I don't drink alcohol anymore, always make sure I get 8hrs sleep each nite, take about 20 pills every day, am on a low-carb diet and spend $500 per month on Abx!!!
PS- I'm a guy, I'm not blonde, but I am athletic!!
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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Aniek
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quote:Originally posted by Hope Is Good: PS- I'm a guy, I'm not blonde, but I am athletic!!
Next thing you know, we're going to have a dating forum.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Jill E.
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posted
I've discussed the dating issue with my LLMD a few times.
He somewhat humorously said to try to meet someone at a Lyme support group. Well, given that there isn't one near me, and the chance of really clicking with someone is so tough even under the best of circumstances, I figured what are the chances at a support group.
There are Internet dating sites for people with all forms of illnesses and disabilities, but I have not pursued them.
I agree with the posts here that we have to be honest. The irony is that if someone we are dating researches Lyme on the Internet, they will probably find the usual propaganda that it's cured in a couple of weeks.
It's really up to us to be the bearers of the worse, yet realistic news (but I agree - not on the first date!! That's definitely a conversation stopper!).
What gives me hope is that there are people with HIV that have partners and they do have to deal with the transmission issue, I have a male friend with MS who is blessed with a great girlfriend right now, and there are uplifting posts here that sometimes the right person does come along.
I'm fortunate that I can still work (although not up to my pre-Lyme days) so I do meet people through business. But I'm in Surfbabe's boat - you meet someone you like then you don't know if they are reacting to the Lyme issue or whether it wouldn't have worked out anyway.
Let's all start a LymeMatch.com website!! Or maybe we should go to pharmacists' conventions to meet people - we know as much about medications than they do just out of necessity!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Thanks everyone for all your top advice & support. It's so good to hear of others in similar situation to me
i feel i've lost out on so much if life already as was bedridden for 4 years of lyme so had so many lonely years when i just spent days, weeks, months, years lying in darkness bedridden hardly able to move so being able to be out dating is a mega step for me - something i only dreamed of. One thing i've realised i want more in life now is to have someone to share the rest of my life with me
To be out dating is great - gives me loads of confidence again when a guy asks me out - confidence is the one thing that i've lost from lyme as i think well who wants to date someone who is ill with no known long term prognosis??!!(as much i want to believe i will get over this illness -there's the unknown?????)
BUT when dating the problem is i dont feel me as in the person i was pre lyme as i cant do all the superactive things i used to do & stay out really late without suffering the next few days. the meds & herxes make me so up & down it's really hard to expect any healthy person to try to comprehend lyme & i woudnt even expect them to!
quote:Originally posted by Hope Is Good: PS- I'm a guy, I'm not blonde, but I am athletic!!
HOPE IS GOOD -what sports do you do?? obviously i surf (well used to before lyme as have had balance probs!)& swim, run, play tennis. - It's great to be back doing sports again as that's what i love most.
i agree about the guilty aspect of passing on the illness to partners which really stops any intimate serious relationships i'd prefer to stay single for life than make anyone else endure lyme.
quote:Originally posted by chroniccosmic: There are incredible men out there, like Bruce, and you will find the one who will help you. Keep being honest and he will be drawn to you for that.
That's great news & really encouraging - where did you meet him????? i'll keep looking!!!!!!!! Posts: 47 | From SP | Registered: Oct 2005
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quote:Originally posted by Jill E.: Let's all start a LymeMatch.com website!! !
i like the idea of a lymematch.com website!! want to set one up???????? i'm sure there are lots of other single lymies like us too
that way we'd find understanding partners! & be able to share & beat the battle of the bugs together but then maybe we would never be able to escape this illness. - that's one thing i like about dating/going out with healthy friends -it helps me to forget about lyme!
Posts: 47 | From SP | Registered: Oct 2005
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Jill E.
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Hi again, Surfbabe (and fellow Californian!),
You bring up a good point about often not being able to do the athletic things or simply stay out as late as we used to do, pre-Lyme.
In my previous post, I forgot to mention that this is an issue with dating for me.
Like most of us on Lymenet, I was athletic pre-Lyme, loved to dance, etc. Living in Southern California, the weather is conducive to being out there and doing athletic things in social situations, whether walking, biking, dancing - and of course, surfing (although I don't).
I find it's been a real issue when someone wants to go out and go dancing or go on a bike ride or whatever. I walk everyday, but I'm not the powerwalker I was pre-Lyme, I can only dance for very short periods of time and not if I'm lightheaded, and I can't do most truly athletic things yet.
So right there, I have to give a reason - whether it's saying I'm recovering from some nerve and muscle injury (which is true, Lyme has injured those areas) or it forces me to start talking about health issues very soon. It's really a difficult situation.
I had gone gluten-free two months before being bitten by the tick. At the time I kept thinking it was so embarrassing to go out (whether date, business meeting, whatever) and have to make such a big deal out of what I can eat at a restaurant - although I usually just say I have a wheat allergy.
But I'd give anything for that to be the biggest problem in my life right now!
Good luck everyone!!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Surfbabe, I agree this disease is so hard to live with since each day can be either really good or really bad with no way of predicting ahead of time. I am lucky enough to have come almost all the way back from being totally bedridden and expecting to die at any moment to where I am today -- many days where I'm 80-90% of my old self. It only took 18 months of Abx too.
As for what activities I do to keep the bugs at bay -- well Dr B insists that Oxygen and heat are great bb killers so I play basketball hard for 2 hrs three or four times per week. Lots of running and breathing and sweating-- it's great fun too. I also play tennis, soccer, ping pong, volleyball, softball & go windsurfing, sailing, wakeboarding, hiking & biking. My newest favorite is kiteboarding-- I started that 30 days after my Picc line came out and it's so much fun I forget all about lyme disease and how I'm feeling at any moment.
The other thing that's great about my newfound appreciation of life and better lifestyle is the low-carb diet I'm on caused me to lose 15 lbs so I now weigh less than I did in High School!! (that was 20 some years ago)
"Anything bad that doesn't kill you only makes you stronger"
Good luck with your social life and don't ever give up on thinking that you can come all the way back to your pre-lyme self. I'm almost there myself - and after being at death's door not so long ago.
Maybe there will come a time when you won't need to say anything to your dates- since you will be a totally normal person!!
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
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AZURE WISH
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a date...well i am not sure I can remember what that is
for me when I meet people the whole what do you do for a living brings up my health - and i have been disabled since 2000 so they think wow this chic is messed up.
anyway you said "confidence is the one thing that i've lost from lyme as i think well who wants to date someone who is ill with no known long term prognosis??!!(as much i want to believe i will get over this illness -there's the unknown?????)"
I really understand this issue but I think that the future is unknown for anyone... anyone could get into an accident, get cancer ect.
I think the difference is that we realize how fragile the balance is and how easily our bodies and lives can fall apart.... most people move through life oblivious to how easily everthing can be turned upside down.
I havent figured out how to get beyond it though. ... at least not yet.
posted
I realised a few weeks ago that I better not even consider dating until I get better. I went on a couple of dates, but I was sooo tired afterwards that it wasn't worth it really.
Surfbabe: I fully understand what you wrote about confidense etc. Even though I don't feel my normal self, and I was exhausted after the date, it was so good to get the attention. Especially because most of the time I feel like crap.
But no, I decided to not even consider dating for some time. It is too tireing. Although, who doesn't want that fabulous and caring man to show up? Who could have stopped me dating mr Caring??!! Posts: 155 | From Norway | Registered: Jan 2006
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posted
Oh yeah, I did tell my date about me having Lyme. But of course not how serious it was... I think I have such a hard time facing the reality myself that I am not good at letting others know. Still, even though I explained a bit plus the fact that I barely can work, I don't think he got it.
Posts: 155 | From Norway | Registered: Jan 2006
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lymednva
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I've dated off and on for the past few years. Only recently has my health improved, but I'm still a long way from being somewhat "normal."
I don't tell about my health problems on the first date. I usually wait until it seems to come up naturally, which is usually on about the thrid date, or so.
I've had guys disappear, but most are compassionate and want to know more about how I am affected by my health. I've actually stayed in touch with a few after we stopped dating.
I do think it's something that needs to be decided on a case by case basis. I am currently corresponding with a man and we seem to be hitting it off well. I want to meet him, though, before dropping anything like Lyme on him.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Hi surfbabe, A person could have a worse disease, like maybe a lying tongue, wandering eye..... not to minimize lyme, (its been brutal for me) but I would pick someone with lyme way above many other ailments. Yvonne
Posts: 258 | From Washington State | Registered: Nov 2005
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lymednva
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Well said, Yvonne.
I've had the other and it's no fun to be with. I'll take my Lyme any day over my ex and his "illnesses."
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by von: Hi surfbabe, A person could have a worse disease, like maybe a lying tongue, wandering eye..... not to minimize lyme, (its been brutal for me) but I would pick someone with lyme way above many other ailments. Yvonne
yeah, well you're a woman so it doesn't count. try being a man with chronic neuroborreliosis who can barely support himself, and try to get dates. It doesn't happen. I picked this crap up in coastal connecticut and now I'm stuck in an insurance network in oklahoma where my parents are college profs. It really sucks and I haven't had a girlfriend in five years, despite the fact that I am attractive and intelligent, and fairly educated. symptoms notwithstanding.
The chronic neuro stuff is fatal to a man. Woman can still get guys because a lot of guys out there are willing to support a woman. but the reverse is not true. sorry to sound so cynical, but I know it from experience. please don't come on and start talking about how someday I will meet someone, when the fact is that I have already lost the girl I dated for 4 years and planned on marrying. she left me prior to correct diagnosis which took years and caused repeated hospitalization etc. during my formative 20s.
I hate people. The only vertebrates I respect and enjoy interacting with are not human. unfortunately I am not romantically attracted to them. not yet anyway.
in sickness and in health? give me a break. it's all about being a walking atm. we live in a fake plastic world - no one cares about anything but money and securing their own personal material comfort.
i didn't start out this way. someday I'll inherit a bit and then maybe the gals would find me attractive. but by the it will be too late, and I will be so disgusted by the materialism that I would reject them anyway out of principal.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Aniek
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Bruce (Is it ok to just call you Bruce?),
I'm very sorry to hear about what happened with you and your relationship. I can't imagine what it would be like to lose somebody you love because of your illness.
But please don't assume that women have it easier than men in dating when they are sick. That simply is not the case.
I have a friend who has a psychiatric disorder, that is under complete control with medication. Many men have broken up with her when they discovered.
The truth is, there are people who don't want to date sick people. Either gender.
There are many men who will not be with a woman who can't take care of their house. Or who may not be a "healthy mother."
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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[QUOTE]Originally posted by Aniek: [QB] Bruce (Is it ok to just call you Bruce?),
I'm very sorry to hear about what happened with you and your relationship. I can't imagine what it would be like to lose somebody you love because of your illness.
But please don't assume that women have it easier than men in dating when they are sick. That simply is not the case.
.................................................
I understand where you are coming from...but at least women can get dates. we all know the societal expectation is on the man to ask the woman out. so it is easier for the woman from that perspective. there is also a societal expectation, fair or not, that a man should be able to support his wife etc... that places enormous burdens on male neuros.
women are not interested in dating male neuros. occasionally I will get a little sympathy, but I'm not interested in pity. I want someone to like me for who I am.
although I seem very cynical, I am actually {a} a nice caring affectionate guy {b} an intelligent well-read guy {c} an attractive guy. I have many other positive qualities.
but it all goes out the window when they find out the history and the chronicity.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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heiwalove
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posted
although i've definitely been scared to tell potential dates/partners about my lyme, so far i've been pleasantly surprised and have not had much of a problem.
it could partially be because i'm a girl who dates girls, and we don't really have all that stupid gender role stuff (thank god). but also, i think i've just been lucky. and i think honesty is definitely the best way to go, no matter what.
i've found people to be really empathetic, caring, and curious as to how lyme affects my life (as you know most folks know close to nothing about it). being sick has actually negatively affected my friendships more than it has my romantic life -- which hurts even more, honestly.
quote:Originally posted by heiwalove: although i've definitely been scared to tell potential dates/partners about my lyme, so far i've been pleasantly surprised and have not had much of a problem.
it could partially be because i'm a girl who dates girls, and we don't really have all that stupid gender role stuff (thank god). but also, i think i've just been lucky. and i think honesty is definitely the best way to go, no matter what.
i've found people to be really empathetic, caring, and curious as to how lyme affects my life (as you know most folks know close to nothing about it). being sick has actually negatively affected my friendships more than it has my romantic life -- which hurts even more, honestly.
~heather.
that's an interesting comment heather...and I really mean this...I've had gay friends and I've often thought "I wish I was gay". but unfortunately I'm not. my gay friends have been far more open to me and understanding, and I know I would get dates and relationships and such if I was gay. but I'm not!
there's also the oklahoma factor...I picked this up at hammanasset bay CT, but I'm currently stuck in northern oklahoma mainly due to the insurance network. and people here, they don't know about chronic borreliosis. they are also very close-minded and stick to traditional gender role stereotypes. I think my gay friends here are more understanding because among other things they themselves have experienced a certain degree of ostracization in Oklahoma - which gays and lesbians don't necessarily experience in more progressive areas.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Aniek
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Member # 5374
posted
Bruce,
All I'm saying is that women have difficulty dating with Lyme too. Just because as a man you have had problems with women does not mean that women do not have problems with men.
Many women have commented on this board how difficult it is to find somebody and how men react when they find out they haven't been able to work for X years.
Some people on this board are probably less symptomatic than you are. From how you have described your illness, I believe I am. That is probably the biggest reason why it is easier for me to date.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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All I'm saying is that women have difficulty dating with Lyme too. Just because as a man you have had problems with women does not mean that women do not have problems with men.
Many women have commented on this board how difficult it is to find somebody and how men react when they find out they haven't been able to work for X years.
Some people on this board are probably less symptomatic than you are. From how you have described your illness, I believe I am. That is probably the biggest reason why it is easier for me to date.
well, I'm not saying that women have it easy. of course I understand that they are just as sick as I am. It's not meant to be an attack on female lymies. But I think that you have to understand the societal expectations which are placed on a man.
In addition, I am stuck in the middle of northern oklahoma...whereas you appear to hail from a large metropolitan area...your chances increase with more people...
but let me ask you...as a female lymie...would you ever consider dating a male lymie, someone who was capable of only part-time employment, etc.
would you?
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Jill E.
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Bruce,
I'm kind of shocked to hear you say that you think female Lyme patients have it so much easier in the dating department than male Lyme patients.
I wonder how much of this is generational (although I really don't want to generalize - we are each individuals).
From your description, I can assume I'm older than you. I'm a baby boomer, one of the women who grew up to be focused on a successful career, was one of the first female vice presidents in my field, have always supported myself financially - and never expected a man to support me.
If the women of your generation are expecting to be financially supported, I'm really surprised. Because the women half my age that I work with seem to be very well-balanced, enjoying their careers but also looking for good relationships.
But I guess in any generation there are individuals who expect someone else to take care of them, whether it's financially, or do all the cooking, or whatever.
What is ironic, is that when I had chronic fatigue syndrome a long time ago (in hindsight, perhaps it was Lyme, although my symptoms were totally different than what I've had since my tick bite of 2003), I had long-term relationships.
It was very hard. I was quite disabled, but I had to keep working because no doctor would believe me, there wasn't even the name chronic fatigue syndrome or fibromyalgia back then so I couldn't apply for disability, and I refused to give up my career aspirations.
But I had to cut out almost all the fun in my life (no social life or hobbies) just to try to get through work. I don't know how I did it, I was so exhausted and brain fogged.
The boyfriends I had were long-term relationships, very serious, engagement, etc. Yet they had all kinds of problems with my being sick - even though CFS was not thought to be contagious. Despite my willing myself to function despite being in a constant haze.
A fiance even said I was "damaged goods" because I was sick and that I would always have a hard time finding someone.
But the greatest irony is that the final reason these relationships broke up was not my illness, but because I kept get promoted in my career and they couldn't handle it.
So anyway, I'm just saying, it isn't easy for men or women, with any chronic debilitating illness. I think for all single Lyme patients it is very difficult because there is a risk of transmission.
I would think that many healthy men that truly understand Lyme would be worried that a woman with Lyme would pass it on to their future children.
And I can barely have the energy to cook or clean for myself, let along take care of someone else.
So if a guy is looking for a woman to take care of him, I'm not the right person. If a guy is looking for a woman to support financially, I'm not that person either. I can't work anywhere near I used to pre-Lyme, but I do as much as I can.
So I think each of us, regardless of age or gender, needs to find the unique individual who isn't looking for the stereotypical perfect person.
I hope each of us find that someone.
And I can empathize about being in a city where they don't understand Lyme. You can add my city to the list. That's why I've become an advocate with the California Lyme Disease Association - and I've discovered there are other patients here like me who were completely mistreated by the local doctors. And we've become our own little support group.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
you know what is most frustrating to me is that I am in reality { as opposed to internet personality}a very affectionate person. I definitely miss not having someone give me attention, but even moreso I miss not being able to make someone feel good. I love touching people, physically and emotionally.
I volunteer at the local humane society and I always spend a lot of time petting the cats. that's getting a little old.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
btw, I have absolutely no problem with dating a woman who has a busy successful career. I'm more than willing to stay at home and take care of the house and read and write books. Right now I'm working on a book about birds and another planned based on my great great great grandfather's 13 volume diary of the 19th century which I have access to through relatives.
I've had multiple relationships end b/c of health probs. one in particular was bad. and she told me it was b/c of my health. when someone breaks up w/ you immediately after you've been hospitalized for paranoid delusions...well that's a bad breakup, especially when you were previously planning on marriage.
I could only fall in love now with someone who had experienced a similar depth of personal destruction. I really can't relate to anyone else at a deep level. but the female lymies I've met and tried to get to know...they were chasing healthy guys.
I'm constantly on the lookout for cute smart girls who are wheelchair bound or possess a similar infirmity. I'm not physically in a wheelchair, but mentally and emotionally I am.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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Jill E.
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Member # 9121
posted
Aligondo Bruce,
I had to laugh in empathy when you mentioned volunteering at the humane society. I used to volunteer every day at a local cat rescue and adoption group.
And how did I get Lyme? By feeding a cat that I knew - it's owner moved and the woman's parents were supposed to feed it and didn't.
It wasn't even my cat!! And now I'm sick.
I still love cats, still like to pet them and dogs, but am much more careful.
But I agree, as much as I love them, it does get old when everyone else seems to have human companionship!!!
Good luck to all of us - I think the Lyme patients I've met are the nicest people in the world. We deserve happiness.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
btw, my real name is not 'aligondo bruce'...that's my fake alias name...it's a literary reference.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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AZURE WISH
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Member # 804
posted
Bruce - after it became apparent that I was going to be sick awhile... crazy pain fatigue blah blah blah ...
not at all the me he met (even though I had been sick 13 years when he met me - I managed for a long time)
Well anyway... one day I got an email. Broke up with me through an email... and I was going to move to massachissets for him -
I was an idiot. I would never move away from my family for anyone now... they are the only ones that stuck around once I was disabled.
People didnt seem to mind so much when I was just sick - It seems to be the being disabled thing that marks me.
posted
I have just started dating again and I'm finding it enjoyable but quite stressful too.
This guy really liked me when I was well and seems to still like me now. He is young and fearless. Can a healthy person ever truly understand all the issues we cope with?
I'm not even sure I should kiss him I'm so afraid that I will infect him. I have been searching for a definitive answer reading up on safe sex, etc.
He has always wanted a family but now I must consider the possibility that I won't be able to have healthy kids.
How do those people who are dating and in relationships cope with all this?
Is it just selfish to try to be with someone while you are still in treatment?
Posts: 15 | From USA | Registered: Jul 2006
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AZURE WISH
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Member # 804
posted
lymelass
I dont think its selfish to want to be happy...just be honest and open.
If he knows what he is getting into then its his decision.
posted
No, I don't think it's selfish to date while you are still sick. I've often struggled with this issue. If you're like me, and you were sick for a long period of time prior to diagnosis and treatment, chances are you are going to struggle to one degree or another for the rest of your life.
The thing is, you have to be very careful about who you are with. I've had a couple of relationships in the past while I was pretty sick...but they were with people who couldn't relate and ultimately the relationships ended in disaster.
I had a terrible experience with neuroborreliosis, probably worse than most people on this board. But the conclusion I came to was that I don't want to be alone for the rest of my life.
Lyme is an isolating disease. If you've really had it bad, IMO, you are only going to be able to emotionally connect with someone who has experienced a similar condition or life tragedy.
That's why I'm desperate to find a female lymie. If someone would just give me the chance and try to be friends first...they might be pleasantly surprised by what they find.
The only things of value in this life, IMO, are things that can't be bought.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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I decided that Azure is right. My friend is a big boy who can make decisions for himself.
I've been open about the Lyme issue and I figure I might as well enjoy it (responsibly as possible) if he wants to stick around despite it all.
Bruce, I'm sorry it's been such a rough ride for you with this illness. I hope we can all get better so that we don't have to deal with these kind of issues and just be ourselves again.
Take care guys Posts: 15 | From USA | Registered: Jul 2006
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Aniek
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Member # 5374
posted
lymelass,
I've had Lyme since I was 12. I didn't know until I was 28. So, I've had Lyme every time I kissed a boy or, well, did anything else.
I've never done anything not-protected. I know somebody who died of AIDS early on in the disease, and I've always been very careful. Even in a committed relationship.
As far as having a family, I'll cross that line when I get to it. I have wondered if I will be able to have children. If my body can handle it, and if I can be certain I won't pass on the Lyme.
I would never marry somebody without sharing these thoughts. But I know so many people who have reproductive challenges. It is possible to have a child without being pregnant and giving birth. And I have accepted that adoption might be my answer.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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stymielymie
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Member # 10044
posted
Well folks ,it ain't a whole lot better being married. Granted i love my wife of 14 years, we have been lucky in that we had money so we don't fight over that.
lyme is tuff on all parties involved including parents. my mom has one son with stage 3 lyme and one with stage 2 AIDS.
it is very hard for people to understand what your body is going thru. you walk outside and the neighbor says you lokking good today. now how many times have you heard that. you shake your head and nod, thanks. meanwhile millions of bb are eating your insides out.
unless you have an autoimmune disease, it is very hard for an outsider ,even a wife or mother to understand wants going thru your body and mind.
i love my wife very dearly, but when she married me ,i did not have a diagnosis of lyme. i am now 52 and she has become a caretaker/ she didn't sign up for that when we got married at 39. i was being treated for lyme for 2 years seeing a llmd, and she still didn't think i was sick. i her mind i was burned out from my job and didn't want to work. after 4 years she finally accepted the lyme, and to let be be with my disease unless i asked for help. the kicker to convince her was not the positive blood tests, the wheelchairs, electric carts in target, or sleeping all day. it was the us government that convinced her. the day i received ssdis she realized i really was sick. DUH!!!!!!!!!
well she is not much of a caregiver and she gets mad at me when i ask her for something. its just in her makeup, she's not trying to be mean.
and now the kicker, the lyme rages 1-2 times a month. last one ended me in a hospital with my throat pumped because i was so irrational the doctor thought i od'd. 3 days in hospital manditory in florida.
so in conclusion, lyme sucks married or not and is probably the hardest disease for a spouse, companion, friend to understand.
ps. and then there is the daily HOW DO YOU FEEL TODAY? answer great just like every other day. good luck all
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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stymielymie
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posted
op
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
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Member # 7136
posted
Just had to add my story!!! When I got sick my ex husband was Lyme phobic even though he had Lyme (and got well). He never touched me again aafter I got sick and I was only 28. For over 2 years I didn't get a hug or handshake, even when getting a picc line in!!! Even when I begged him to hold my hand when the picc was going in and I was scared!!! After I got better, I assumed it would change. But I was still chronic & even though I had normal energy again, he did not change. I tried to get him to go to counseling for a full year but nothing changed except that in response to this he told me that there was no point to me leaving him because I was sick now, and ugly (the Lyme had affected my thyroid made my face swell up all puffy above my eyes especially like a monster I thought) and "no one will ever want you again." ANYWAY, talk about self-pity!!! Boy was I despondent!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I loved him. But I was going to die from sheer loneliness!!!!!!!!!!!!!!!!!!!! After 3+ years of never my hand being held nor ANYTHING else, I told him I wanted a divorce. And got one.
I thought- what he told me all the time by then- I was ugly now, no one would ever want me again!
But something weird happened.
That swelling around my eyes went down, but this sounds weird, but the swelling had stopped me from aging I think, because I look so much younger than I am. I looked BETTER, all of a sudden, then many peopple my own age. And I got into shape now that IV Rocephin had given me my life back. I began running 8 flights of stairs 2 times a day 3 and 4 times a week and ta da- I was a muscular, blonde size 5 again!!!!!!! (But I have never been the varnished nails type blonde, more the slightly tomboyish but ultra naturally femme type).
ANYWAY, I began to get asked out lIKE CRAZY!! In the supermarket!!! By a 23 year old!!!! In the park!!!!!!!!!!! Out around town!!!!!!!!
I was ASTONISHED!!! At first I thought everyone felt sorry for me or something, but after the 23 year old (he was adorable his name was JOsh I turned him down because he was too young for me but boy it was good for my ego!!!)
And then I went out and hAD FUN!!! (No, not sex, FUN! Without sex!) But I was SCARED to tell anyone re Lyme, scared to GO THERE verbally or elsewhys!!!!!!!!!!! I was convinced my ex was right & I was ugly now and that everyone would be as phobic re sickness as HE was!!!!!!!!!!!
Finally, one night, after many many first dates with people that went nowhere (they always liked me but not vice versa I mean I liked them as friends!~! not partners) I FINALLY told this one guy- Keith- and he laughed warmly and said, "Everyone has SOMETHING!" and I realized he was right!!!!!!!!!!!!!!!!!!!!!!!!!!!
A year later my current and hopefully forever husband told me he had terrible diabetes and my first response, "Everyone has something. I have chronic Lyme!" I learned by then that it was true. ALMOST everyone has SOMETHING they are afraid to share whether it be physical or not.
Now we are married (I knew him for 16 years but just thought of him as a friend until one day, when I thought, "WHat a dork!" and swoosh it was love*)!*)!*)! and have a little Lyme-free baby named Isadora and my older in-Lyme-remission daughter Evan and 6 cats (Christian, Catkin, Gink, Diamond, Duchess and Harley) and life is good.
And a few years ago I never ever ever thought it would be again!!!!!!!!!! Sincerely, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Aniek
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posted
Thank you for sharing Sarah! It's always good to hear the success stories.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Aniek
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Member # 5374
posted
Well, the guy I'm dating just asked if I like camping...perfect opportunity to mention the Lyme thing.
I had already mentioned I have a reactive arthritis and that I get back pain. He didn't seem too scared by it, we still have a date for this weekend.
I didn't plan to tell him on the phone, but we arleady hit date 5 and I hadn't told him. So at least it's done.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Lymelass - You asked how people in relationships do this and if it's fair while you're in treatment. This is something I've struggled with a lot.
I've been with my boyfriend for 3 years now, and for nearly half of that time I've been on this roller coaster of pain, etc., and trying to figure out what's wrong with me.
I used to always tell him "if you want out of this, I'll understand." We have a discussion about it occasionally and air our concerns. I think the most frustrating thing to him about it was when I was so insistent that it might not be fair to him.
We're young (24 and 25) and just starting our lives in the "real world," and I struggled with things like 'he should be out having fun with his girlfriend,' 'his whole life is ahead of him, he could easily find somebody healthy,' etc.
But I finally realized that he's willingly doing this - he's fully aware of the situation and he knows I'd understand if he left, but he chooses to stay with me. I shouldn't insist he's wrong, I should be thankful he loves me so much!
The key, as in any relationship, is openness and honesty, and to remember that we all DESERVE somebody who will love and accept every part of us, even with this nasty disease.
Posts: 106 | From Michigan | Registered: Oct 2006
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posted
Well as for me I have been divorced now for almost 2 years, married for 22 .I was diagnosed with M.S. 15 years ago and in my 40's now but just a few years ago was teasted positive for lyme and since finding out and treating ,I've been responding thankfuly favorbly as of late.But my ex was no help at all, or much emotional support and blamed me for thinking I blamed him for my illness. And yes I was angry at being ill but he couldent understand it wasent directed at him but just any one near that happened to be around.
So now I find myself single again living on my disability check and megar child support and raising two teen age kids on my own. But at least I'm making it "through the grace of GOD" and I have been trying to love myself again because I think it all starts there,because if you dont who else will want to?
I atemted internet dating a few monthes ago and got hundreds of winks' for the problem has never been how I looked if I only felt and walked as well I'd have it made.
But the few guys that intrest me I would then write back and disclose my M.S./lyme illness and most of those would then say no thanks and run like the wind and the few that I did go out on one date with just seem to be perverts and want only one thing,yes I miss sex too but its not going to be with some stranger I hardly know, but it will be well worth it if I ever find someone worthy.
I just dont have any single friends now and I dont think I would be well recieved walking into a hot spot with a walker in toe, but hey at least i'm out of the wheelchair now.My next goal is to move up to a cane.
And if I have learned anything through this illnes I know what is truly important, it's love, family, close freinds and health and not power, money and materialistic things.So "Bruce" not sure of your age but if you lived closer I'd go out with you, for I am really not looking for someone to support me finacialy but someone that could understand all my hardships and be able to cheer me on to more acoplishments. Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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Vermont_Lymie
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Member # 9780
posted
Yes, as doc dave pointed out, being married with lyme can be a struggle too.
My husband, who is generally very supportive, does not believe that I have lyme. Says it is all in my head (and of course, since the bb are probably in my head, in a way he is right!)
Despite the improvement that I have made in the last four months on antibiotics, despite the obvious change in me that even people who do not know that I have lyme are commenting on how much healthier I look since starting treatment.
Not sure what to do about his denial...
But as sarah pointed out, everyone has something! true...
and I still believe if you are single and meet the right person, then they will accept the lyme diagnosis and love you anyway.
Posts: 2557 | From home | Registered: Aug 2006
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stymielymie
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Member # 10044
posted
vertmonty:
the only way you can convinve him is not. you alone will never confince him.
therpy is necesary with a psychologist that specializes in chronic illness. no body else will do.
you husband must be open to going, and be able to express his problems with the relationship.
if not, even with therapy, you may wind up without a parnter. i have come close 4 times and it is a struugle. i was hospitalized for 4 days due to my lyme anger. when i got to the hospital i did not remember a thing.
therpy and drugs are the key to contol a good relation wife your spouse. if they don't understand what is going on in your body, the relationship will never make it.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Vermont_Lymie
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Member # 9780
posted
doc dave,
thank you for your wise advice...
I agree and i know, therapy is a good and often necessary thing for relationships with these kinds of long-term health challenges. thanks for sharing the story of your own struggle.
though in my own case, my husband feels about therapists much the same as he does about doctors -- hopes to never see them!
I have been lucky in responding well to lyme treatment; getting much better (though still have far to go) after only 5 months of abx. Still, there are alot of bumps on this road! And it has been tough having a partner not usually interested in the struggle. Single or married, all lymies have the relationship issues to deal with along with treatment.
Yes, I think you may be right -- I alone cannot convince him.
Thanks for your thoughts and best wishes for your health. Live long and prosper!
Posts: 2557 | From home | Registered: Aug 2006
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MagicAcorn
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Member # 8786
posted
My hubba knows nothing of lyme disease or my other health problem. I have a son with Lyme disease also. He knows we are sick he just doesn't have the DESIRE to learn about it.
The important thing is that he cares for me and supports me in other ways. My hubba shops, cooks, and helps chauffer the kids when I can't.
I have been upset about this and did have a certain amount of resentment toward him at one time. I've gotten over it. Marriage is for better or worse, sickness and in health. That doesn't neccessiate them learning about what ails us.
He didn't learn about his parents ailments either. He was just there for them and helped them do what they couldn't. They still loved him for it. It didn't matter he didn't know the details of their cancer or heart problems.
My point is, not to assume that someone doesn't love you or care because they do not do things the way you would. The way you do things is one of the reasons they like you, and the way they do things is one of the reasons you like them.
As for therapy. I think it is way over rated. A lot of times it is used today to only prove "I'm right and your wrong." People go in hoping the other side has their point of view changed. People even choose therapists they think will convince their partners that they are right. How can this be successful?
When we are sick our view of everything is skewed. What we think is a raw deal now, may be a viewed as g-d send when you are feeling better.
So as long as your mate helps you in other ways, I wouldn't worry to much about them not being a learning partner in your quest of understanding your illness. They are with you not your illness.
Someone needs to work, fix things, run errands, chauffer you around...these are all supportive.
I wish I could discuss things with my hubba but that ain't happening. He isn't the one to do that for me. However, what he does give me is a safe place to live, where he supports the family finacially, and makes sure we all get to our doctors appointments. So he is is being supportive in his own way...just not in mine.
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