I'm leaving this post unlocked. I don't know if people from other communities in HealthUnlocked can see and reply, but if you can, please do from the perspective of your own chronic illness or disease.
The Dana-Farber AVO trial ended for me this week. MRD-, partial response (a single lymph node was 54% of a millimeter larger than the antiquated standard). 3 days left on acyclovir and Bactrim. Funny, I don't miss taking the pills. Imagine that. But, for now, I'm going to try to imagine that even for chronic lymphocytic lymphoma, remission will mean I'll have longer periods of time during the day when I forget that I have it.
Severed from a domestic partnership a year ago, I was on a first date last night with someone I knew I already liked from her profile and the way we chatted together: frequently and affectionately. Dinner went great. Even held hands during COVID (brought sanitizer). But, I think I communicated too openly throughout. Openly enough to be lauded for being genuine, but maybe too genuine to be compelling.
Question: If you are dating, have dated, have thought about dating, or remember dating, when would you tell an interesting online dating prospect that you either have, are in treatment or watch-and-wait for, or in remission from CLL and why?
Glenn
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I hope you see more of your first date. If they are no longer interested now, then in my opinion, the relationship probably would have struggled eventually. Being honest from the start provides a good foundation and it's an unfortunate fact that as we get older, we are all increasingly likely to have chronic health conditions. Knowing exactly when and how to break the news that you are in remission from a chronic cancer that is likely to come back eventually is certainly a tough question to answer, so I hope you get some helpful answers. With on-line dating, whoever is entirely honest with their profile isn't likely to get a first date . At least with HealthUnlocked, anyone interested in you can get a much better appreciation of your character!
Wishing you another chance at love. It is possible, even with an incurable cancer .
Thank you for your terrific reply. I think you're right. In this "swipe left" culture, see that chronic condition, swipe left. Pass. So what I'm taking from your reply is to maybe not put it into the profile, but talk about it asap in person. Accurate?
The word cancer is so emotive and the health impact so broad, that the only way you can do it justice in the setting of a potential relationship is to openly discuss it in person at the appropriate time. Perhaps that could be hinted at in your profile with a statement "successfully treated for a chronic condition" or somesuch.
I find the ‘amusing’ aspect, is when ‘the right time’ never quite arises..
..at least, I’m sure it is the correct or wise advice, just that finding a ‘suitable’ juncture to cover this tricky ground is (or can be) quite the challenge!
Glenn, sounds like you had a fun first date. Good for you. I am so set in my ways, I can’t imagine how hard it would be for anyone to date me. Lol.
So when do you tell someone you have cll? There is no right or wrong answer to that question. It’s whenever you think they need to know or you want them to know.
That said, anyone who takes dating advice from me is an idiot.
Jeff, you're funny, man, and probably a bit more self-deprecating than necessary. I think there's more than one "someone" for everyone, at all time. I think I want them to know before they even consider either reaching out to me or responding to my reaching out to them. I think I want to sort out people who don't understand that, as AussieNeil said, the older we get, the more chronic conditions we develop. But, by sorting out before meeting, maybe I make it too easy for people who might understand, or might have chronic conditions themselves, will pass when, in actuality, we could make magic together *and* care for one another when needed. To me, that mutual caring is what love is about. Love is a verb.
Yes, I did tell her up-front. It's currently on my profile. I'm in a high-population area, so I imagine there are plenty of women who would not be frightened away or think I'm looking for a "nurse with a purse". Well, nothing is really confidential online. Someone at work could see my profile and show someone else, then my colleagues know, not like I care. But, you don't have to use your real name or give any information that could identify who you are or where, specifically, you live.
so your name is confidential unless you release it to the person who inquires? if thats the case i would keep the description on your profile-leukemia in remission
You’re clearly a pretty open guy anyway if you’re happy for this post to remain open. I tend to be very private but understand the issue you are describing.
Are you concerned you may have over-shared too early? You don’t describe her reaction.
I’m not in this position but can appreciate how difficult it must be for people who are. I’d be tempted to weigh up whether the relationship could be going anywhere before the big disclosure but your health situation is pretty sound just now. As Neil says, very few of us here are teens and twenty somethings expecting partners without any health issues at all.
I’m not sure if you’re asking this as a general question or if you’re wondering whether you may have ‘frightened her off’. If the relationship holds any promise and the person is genuine and unselfish, she’ll ask for more information and be supportive.
Thank you, Newdawn. Hmm...I wonder if locking the post might make it more comfortable for people to respond. So far, it seems pretty good.
I share up-front, on my profile. I'd rather screen out people than waste both of our time. Also, most of these dates seem to involve dinner, and I tend to pay, so I'm spending more than $100 each time. That's not the real reason, but it's a factor, I guess.
I like how you're saying it might be good to see if the relationship could be going anywhere before disclosing. Like, it could be "Would you be interested in a second date?" Then, maybe tell her at that point so she can think about the 2nd date and get back to me. Then again, though, I might get my hopes up and have them dashed. Again.
I don't think I frightened her off. I just think, for her, that ephemeral "something" wasn't there. I think she is generous and unselfish, and that I just wasn't quite what she was looking for. I think she'd be kind and supportive. We'll see. I asked her for feedback. I think she'll offer some and will be honest. That's one of the things I really liked about her.
Certainly more people out there, even though I'm about to leave a major city to move back to my former home in a very small town in a rural area in order to escape the coming flu/COVID season. There will be even fewer potential dates out there for me.
You sound like a pretty sensitive guy Glenn so I’m sure there’s someone out there for you. We can only ever be ourselves and the spark isn’t always there regardless of the ‘illness issue’. You’re in remission so I don’t think you need to over state something that may not fully be understood. It sounds scarier to those not initiated into the blood cancer world! 🥴
I can’t believe women still expect men to pay, I’d insist on paying my share!
Thank you, Newdawn. I know there are many people out there, still, with whom I could fall into mutual love. Yes, sometimes it really just is about that ineffable "spark".
I wouldn't say she--or any of the women for whom I've purchased drinks, dinners, and desert in fairly pricey restaurants--"expected" me to pay. I just put my card in there. Sure, any of them could have said "Let's split it". I would not have argued, but it's OK. It just means that I have to be more explicit, as in "Let's meet someplace for only coffee or a drink, and if we both think there's good reason for a second date, then we have one, whether its a walk, museum, or dinner and drinks."
I like the idea of bringing it up if a second date is on the horizon. No sense in getting into it on a first date; especially since you said you might have been a bit too open. While not in your situation, I find that when the subject is broached, I end up talking about it a little bit more than I probably should. I agree with Neil. If the person doesn’t want to continue the the relationship because of it, It is good to find out early. You are out the $100, but maybe you had a good meal out! You might also want to try meeting for lunch, or a dessert date where you could get the feel of the situation, still be a gentleman and pay for the outing without such a steep first time investment.
Being married for 48 years this August, I cannot imagine have to get back out in the dating pool! You are courageous!
It sucks, Becky. So, I’m going to try and enjoy it. I definitely talk too much about it when it comes up. I like your idea of remaining silent until the topic of a second date comes up. That way, she gets to know *me as me* instead of "me as cancer". She can decide after that.
I admire your honesty and bravery regarding this subject. I am single and have
spent many an hour trying to work out how I would approach this situation. despite my advancing years of 68, i am not dead yet!!
I feel that whilst we want to be honest, i think if we share too much too soon it can put people off. I seem to remember watching a TV prog. about this, with the do`s and dont`s.
One of these was that sharing too much too soon overwhelms the potential date.
I think the trick is to keep things light initially, and show your other qualities., and interests. these other activities/qualities show how you approach life, ie. cup half full or /empty. You are also getting to know them.
If your doing all that then, as you get to know the person, and disclose, you show eventually, how the CLL is part of your life that you are managing. You are not being dishonest, we need to size people up to see if we can trust them with our `wounds` and that these will be treated properly. we need to get to know them to do this first.
We are more than our CLL, or anything else that comes with age..
I have surprised myself answering this post, I still go thro anxt when replying, to any!
this was an area of work for me once.
And now i must take my own advice!! and wish you well, and hope some of this helpful
sharing too much is not the same-in my opinion-as revealing having a blood cancer in remission. In fact having them know about it in advance so they can do the inevitable 'google search' seems better than revealing it later on.
YES! I'm not an over-sharer, but if someone asks, I'll answer a question as truthfully as I possibly can in that moment. I think you're right. If they're interested, they'll look it up and come back with questions. Ha. Maybe I could send them a link before a first date! OK, that's a bit much. Maybe I wouldn't do that.
I'm honored by the time you took to reach out and share your thoughts, feelings, and experiences with this issue.
My life has been a roller-coaster. I was telling a friend last night that my life is bipolar and that if I get too attached to either any of the ups or downs, I can become bipolar as well! From the kidnapping and murder of my sister at aged 16 to bankruptcy brought about by betting it all on something that very nearly made it onto CNN as a service to CLL and more, there's a lot of water under the bridge. I get asked an innocent question and it connects to all that for me; all I experienced, all I've learned, and all it's done to inform the way I am in the world now.
I'm going to have to look up information about the program you mentioned. Certainly there is such advice on YouTube if nowhere else. I wonder, though. Would the same thing apply if both people disclosed up-front? Like, let's say I found someone online who said she had, I don't know, rheumatoid arthritis. Would I still hesitate to disclose, or would I disclose more quickly to let her know I, too, have a chronic condition and I get that we all need a little help sometimes. Do you think that might make it be different?
For me - you can all call me shallow - there are (or have been) many conditions that a potential partner might mention that would give me great unease / concerns..
[ Did my 5 years with a girl suffering ME/CFS - myriad symptoms - really serve me well? Complicated. I helped her to get well.. then we split!! ]
In many senses, CLL in remission or in W+W is a far better situation than many other chronic life-limiting diseases..
But we are sharing news that we have cancer, and this is a huge deal for very very many people, the more so since, as we are aware, CLL is rather unusual / outside of people’s experience and conceptual understanding of cancer.. I can imagine many a potential partner glazing over and finding the information very tricky to grasp.. on the upside, you are likely very good at gently and concisely explaining, with the probable benefit of (fingers crossed) good remission from advanced treatment.
I suspect that there will be many people to filter out in finding a new partner — but I am jaded, so do your thing and be both bold and optimistic.
Thanks, Shedman. Complicated indeed. Were you diagnosed with CLL when you were with this person for those five years? It seems to me that the potential upside of telling my truth up-front is that maybe I'll find someone with her own issues and we can agree to care for one another. CLL is bizarre. I feel extremely fit, and various measures bear that out. Yet, there's this chronic cancer. My ex is six years younger than me, far less fit, and has multiple chronic conditions I would have been honored to have been able to help her with. Somehow, in her mind, as a rescuer, it became all about me, and that that's how it would remain. Now, she will suffer on her own (excepting her loving friends and family). I won't be there to reciprocate with honor and I don't see her getting into "the dating game". Feels like a wasted 8 years in that I don't get to show how I, too, can step up.
Aside from my long term weariness.. the relationship ended 6 years before my diagnosis.
Relationships are all about the complexities and frailties of people — health issues are not a requirement for success nor failure..
I knew in that relationship that i’d become carer in some sense, memory man to partner with memory issues - key to seeing her usually get advocacy toward appropriate outcomes with doctors..
There were other factors, of both parties, made it an unlikely relationship to succeed.
I hear your pain / disappointment at how those 8 years were dashed without apparent calm reflection.. without giving the relationship a time and opportunity. Sad and frustrating.
Hi Glenn, it seems to me you may be making more of "the cancer thing" than is necessary. If as you've said, you feel extremely fit, I guess that means you're no couch potato. Meaning active and healthy, apart from the small detail of having a compromised immune system due to a leukemia you've successfully been treated for.
I think most mature adults understand that half of us will get cancer before we die. Yours and mine happens to be one of the least aggressive forms, and we can't really claim we've drawn the short straw.
So in your shoes I'd talk about the things you like to do and aim to do, and let leukemia come up naturally in passing. It's there but no big deal and it's not going to interfere with your habits and hopes. Answer questions honestly, go easy on the medspeak, and you'll be fine.
I don't know. I'm not sure I share your sense of the disease. I mean, what does "remission" even mean with CLL? It means a "holiday", and, over time, likely an increasing severity of treatments unless the treatments continue to advance as quickly as they have been. The best I could do in the moment was to say that I, personally, would rather have two years with someone I loved then lost than to not have those two years. Then I added "And my doctor has me on the 40 year plan and I'm only 7 years in." I was diagnosed at 52.
Well Glenn, to me "remission" is just another medical term. I've had CLL since January 2006, the month my father died and nine years after losing my first wife to cancer. CLL made me feel a bit off at times, especially the treatment, but it never made me really ill to the extent I couldn't get out of bed or do normal stuff. I never missed a scheduled dog-walk for example. My response to treatment is technically partial, but even with undetectable disease we all know it can make a comeback.
Life is what happens during remission, the time between the miracle of birth and certain death.
I would say in that circumstance, you could disclose the CLL, as it balances out but its also about your
own gut feeling, if it feels right.
the programme i was referring to was Drs Hannah Fry and one of the Van Tulein doctors, ether Chris or Xander(twins), who did a prog on dating sites/Tinder and algorythms ? spelling, to how well they matched people.
It was UK, but as you say there is a lot out there.
When would you want to know if she had a medical issue I assume right away honesty is always best policy and sometimes it truly hard but my dad told me that some 50+ years ago and I’ve lived by it! I wish you luck with the dating and continue to kick CLL’s ASS!
Thank you. I would want to know right away, not to screen her out, but to activate my empathy and, if nothing else, to make friends who can encourage one another. I’ll keep on kicking CLLs sorry ass!
There are many ways to potentially deal with this, and each will be right for someone. I say go with your gut. It seems to favour early disclosure. I would tend to agree: getting it out there over your profile allows those who would be put off to be so, avoids a potentially awkward moment of disclosure, allows people to do their research in advance if they want to, signals your implicit desire for honesty in a relationship, and then allows you to give the date itself to showing how much more there is to you than a cll label. Best of luck in your search!
I have unfortunately been on the opposite end of this. I am single raising two teens. I want to date, have a relationship... just live. I am in W&W right now, so my numbers still look ok. However, I do have the fatigue and all of the other fun associated with CLL. I am at a loss of how to talk with people about this while dating online. It's something that isn't exactly an easy topic to discuss, I have lost a couple of contacts just from being honest about it. ( One lady I was seeing worked in a medical center by the hospital where I work and see my oncologist. She saw me going in for an appointment and asked what was going on. We lasted about another 2 weeks.)
Uggh. I don’t like that story of how she managed to stick around for only two weeks after you told her. It’s like we’re looking for a single needle in a field of haystacks.
Am on w&w for a year now and have recently started dating, she is a widow of 4 yrs her husband having died from cancer.
You could imagine I fully expected her to end the relationship but having told her about my condition after a few dates and giving her the facts, we are still together, she said I was prepared to lose her rather than not be forthcoming, and that spoke volumes.
I am long married - 39 years, and very happily. So my comments are based on friendship relationships. I have a condition - call it a disease or call it an allergy - although it isn't really either - which carried a stigma. It affects life choices, particularly relating to places I might enjoy going to. And I am also coeliac - so have to be rigidly gluten free. I belong to a very very well known support group for the condition I am not mentioning - there are over 200 meeting of the support group each week in the city I live in (Manchester UK). In UK another group has the same initials and comes and mends your car when it breaks down whilst driving. New friends often prefer not to remain friends because they think I may be boring, and won't go to pub for a drink etc. The coeliac disease is actually more of problem. Existing friends just ask "where will you be able get food you can eat" if a group of us are going out. But others think I am a weirdo picking on a "trendy" thing to have. I get how hard it is to know what to do, because I find it hard with friends. The support groups I go to, we have a system of people who have been around a while "mentoring" new comers as they work to achieve recovery from the thing in question. Coeliac worries them, because where do you go for coffee with someone who is gluten free. Actually Costa or Starbucks are fine. But it is the unknown. So if I was wondering what to tell people I would say, in your case "I am in remission from chronic leukaemia. Possibly on your profile in the middle of a paragraph, so it seems to be not important. AND so it seems nothing which is shameful.
I don't have a lot of dating experience because since college, for better and worse, I've gone on a date and made it stick. This has resulted in being married twice and had one long term relationship, so I'll take this in another direction given my experiences. First, anyone worthwhile can handle CLL. My former husband has a serious chronic condition which he told me about second date and announced to me six weeks in he was in quite a bit of credit card debt. I got married anyway. The relationship failed 20 years in, but not because of his condition or money. The silver lining of needing to reveal CLL is it's a good filter for personality traits that are useful in a partner. I think the second date reveal was good timing, but you have to do you. Second, you are the same age as this former husband, i.e. you are dating people my age. I think a dinner first date sound exhausting and expensive. The "kids" meet for a drink and either split after 30 minutes or take it from there. I know a lot of people are doing Zoom first dates. Maybe there is another way? Third, the fact is your age and your gender are in your favor. The older we get, the more chronic health issues everyone else has. You aren't the only one. While women are more confident in their 50s, it's a little bit of no man's land dating wise, so you will be fine as long as you aren't too picky.
Hi Ellen. Thank you. I like the “drinks only” or Zoom meetings. This “dinner first” thing has got to go. My ex bailed just when treatment yielded positive results and I was getting “me” back. I guess she felt I was then strong enough to handle it.
That's awful, but I guess things were building up before that. I had the opposite situation. Mine offered to take me back and take care of me, which created its own kind of stress.
Within weeks of being diagnosed with CLL I simply deleted my dating profile. End of story. I've been single a few years in any case. My feeling is that if you are meeting someone in person on a date, then you should disclose your condition, otherwise it's not fair on the other person.
Well im so happy that you are dating cause its been a no man's land for me! Guys get freaked out when I tell them about my CANCER! So I feel ill be single for a bit..But hey if you know any Gay guys that are kind with compassion Let me Know! Cheers to a Second Date Buddy!!
Glad you are putting yourself out there for more adventures in relationships. Talking about cancer on first few dates is like talking about your ex, real turn off. I am not saying don't be honest, just not the whole focus point of evening. Blessings.
Agreed, Big_Dee. Anything I say about my ex is positive, and I do keep it short, and bring it up only when asked. I think the same strategy about CLL might be good for the first date.
My feeling is being upfront and honest are virtues we all appreciate. That being said I didn't hurry the upfront part with my last relationship mostly due to my fear that the news would scare her and prevent us from getting to know each other. We met in person and not online but I would have taken the same cautious approach regardless. I had recently received my diagnosis so that was different from your situation in that I was still very much preoccupied with the shock of it all and still pretty clueless as to the direction it might take. It was foreign territory for me both the CLL and literally as I was in Nicaragua. After a few weeks of hanging out together and realizing there was a lot of physical chemistry being stirred between us I chose to let the truth out. Turns out she suspected there was something keeping me from getting closer to her and it might be health related. The truth is she thought I might have HIV. When I told her it was CLL she looked very relieved and was supportive from the get go. In retrospect today I would not have the same worries about divulging this information early on but it did give us the chance to get to know each other without immediately making the sexual part of it front and center.
I haven't been on HU in over a year, so did not know about your breakup. So sorry! I decided to try the online dating the same month I was diagnosed...April of 2015. I was navigating those new waters as you are, and developed many relationships (obviously pre Covid, since it was 2015) where if I felt comfortable with the person I would tell them, but if I didn't, then I would either wait to tell them or end the relationship. In July of 2015, I started talking to someone new and I truly believed we had a connection. However, I waited until our third in person date (we had been communicating by text or phone for several weeks first) before I told him. One year later, we were engaged and we just celebrated our 3 year anniversary. In other words, be careful, be safe, have fun and listen to your intuition with each person you meet. It worked for me
I love this story. Thank you. It makes sense to me. Why tell my story to someone I'm not interested in? Why withhold from someone I am? I like your strategy of waiting a few dates before revealing.
I’m not saying it’s for everyone, but it worked for me. Let them get to know you first via email/ text/ FaceTime or phone calls. I made up the “10 questions” Game. During each conversation with someone I connected with , which was at least a few times a week, I would ask 10 random questions that I wrote out beforehand, and then asked them to prepare 10 questions for me for the next conversation. It could be something as simple as their favorite ice cream or their favorite place they visited, and as the questions and the days progressed, the questions became a little more personal or serious. It was very easy for me to weed out those that I didn’t connect with anymore, and those that I believed would handle my diagnosis appropriately. It was actually a lot of fun and you really get to know the person before meeting them! Then after you meet, decide when it is right, if at all, to share with them your condition. For me it was the third date, and we are now going on 5 years of being together. And it’s still fun!
I am not much of an authority on dating since I have been married for 49 years and online dating would scare me.
Do people share illnesses on the first date? I would think the 2nd or 3rd date would be a good time to share your story. Remember how you felt when you were first diagnosed.?The word Leukemia might scare her, I would tell her Cll , chances are she never heard of it. Then the conversation could open to explaining it.
She may even have something herself.
It is so nice that you have started a new life and now ready to share it with a new love.
I’d put the whole Leukemia thing in your back pocket and save it for date three or four. I’d also take that information off your profile. If you were sitting at a bar and met a lady would you feel compelled to tell her everything about you right there? I wouldn’t. I didn’t marry until I was in my mid forties so I’ve been on close to a million dates so I speak from experience. Only kidding but it felt like a million. Take it slow! You can be honest without telling a date everything about yourself immediately. A couple of other thoughts to consider: 1) your dates are likely in their forties and fifties so by definition they have baggage, too. Thus, there is no need to fixate on what you see as your shortcomings. Everyone has history and issues by the time they reach middle age; 2) you just successfully completed the AVO trial and reached undetectable disease status. Maybe, just maybe you are cured or in for a long, long remission? Who knows but my point is don’t let this disease define who you are as a person.
Hi. I was searching to see if there was a post about dating, and i apologise as I'm a very dip in dip out of this incredible cll group.
I separated in May 2018, and was diagnosed with cll in the months following after my eyes threw a thyroid hissy fit and two years later my eyes aren't perfect, infact I don't like them at all, as one is a bulger and the other a drooper, however with make up and smiling it's less noticeable. As you can tell its my eyes that bug me and not my cll!
So, I've been dating..... and dating..... and dating! Thing is, I genuinely forget I've been diagnosed and having bought my own house, stopped panicking so much about my facial feature change, my last bloods were entirely normal. Gone was the wbc of 31.....sitting now in the 4's. Consultant said that stress plays a huge part and although I'm worried about how I look I'm not really stressed about something I can't change. So, dating is my hobby these days! It's wonderful to meet new people, hear about their lives and I've only mentioned to two guys about the cll....I think it impacted on one significantly (we were dating at the time of diagnosis) ... and the other only after we decided just to remain chums (which we are). It is tricky knowing whether to say anything or not, especially when you're told that you've probably just been diagnosed way too early! So, i think for me, I'll always wait and if I get that sense that this is someone I could really potentially see myself with, then I'd have to spill. But until that happens, I intend to not put any pressure on myself, enjoy the journey... or just the ride.... 😉.
Oh. As regards paying, I'm always quicker with my purse than guys are with their wallets! Controversial!?!? 😂
And.. oh.. again..... absolutely right, women in their 50's (new to 50 myself).....the confidence is oozing, even with a quasimodo face!
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Rehearsing being 'In Remission'
How is \"remission\" defined for CLL?
Documented remission without drugs
FCR-6plus years in remission - am I cured.
CLL REMISSION.
