tell and when

Misfit Toy

Senior Member
I am really sick right now. I think I am the sickest I have ever been. I am torn because on one hand I want someone in my life and in the other, I feel I am too unwell. However, this illness is a real up and down deal and there are days, I wish someone was in my life that I could share a meal with.

The hard part, how can I if I am so ill? My friend who also has CFS and is nowhere near as bad as myself because he can work practically full time...tells me not to tell a guy that I am ill until later on. "Don't freak him out."

Well, I have been sick for quite awhile now and really bad this weekend. This weekend I have been barely able to do much of anything. How do I not tell a guy I am ill? Does anyone have any recommendations?

There is no one that I am presently interested in, but if someone comes along, I want some of your thoughts because this is the kind of thing that can cause me such anxiety with fear of what is the right or wrong thing to do. :ashamed:


Senior Member
I've tried to hide it. It doesn't work. My last boyfriend, I did tell him, but alot of times we were together I tried to hide it, like how bad I was. He told me later that he knew and could tell. So that made me feel worse because I thought I was being successful at hiding how bad. You can't hide it. They know. They know when you can't keep up or you're too sick to do something, or you can't be all you can be in bed because the energy isn't there. They know.

Other relationships, I had one guy I told who freaked out and yelled at me because he had a son and said he was afraid I'd give it to them and how dare I. What was interesting was, to me, that was a normal reaction. Like someone finally got it that we are sick with something contagious. It still made me feel bad, but at least someone had a real normal reaction for once.

Other guys, usually they will tell me they can handle it, but they can't. They'll be like, oh I can deal with it. Then they see the reality of how bad it is and they can't. Soon as they see that I can't make them dinner because it drains me too much to make dinner and be with them, or if they want me to go out with them someplace and I can't do the walking and can't keep up, or a thousand other things they want to do that I can't, after awhile, they run away.

You have to tell, they know. Or they will suspect something is wrong and if you don't tell and they think you're hiding something they will start to wonder if you have AIDS or whatever and that will only make it worse.


Apple, anyone?
Northeastern US

If it were me, I would mention it right away, but not go into details about how it affects you other than preventing you from working full time. If you have a profile on something like, you could even briefly and calmly state you're ill in your blurb. This would do two things: reduce the number of responses to a manageable number (didn't you say you were overwhelmed by how many you got?) and screen out the guys who can't deal.

You know how you can kind of tell when someone has fallen for you? Once that happens, you could start to open up more about the limitations your illness places on you. It should become obvious, anyway, because as he spends more time with you he'll have to see you crashed. The feelings he's developed for you by then should help him handle the reality.

The person who is right for you WILL be able to deal with it, by definition. If he can't handle it, he's not right.

The above applies if you're seeking a committed relationship. If you're looking more for casual dating/ hooking up--and why not? Girls have needs, too!--I wouldn't mention the illness because it should have no bearing on the dating.

But what do I know? :D


Hi spitfire,

I don't think there are any hard and fast rules about this type of stuff. Every man is different, and they will all react in their own way your illness. Ultimately, though I don't think when you tell matters as much as how you do it and how the guy reacts. Some men are just not interested in coping with a chronic illness (or not capable), and that's OK but you don't want to be with a guy like that so it's good to find that out. But others are not put off by it and can be accepting. You never really know!

There's a couple of things that might help. The first is how you feel about your own situation. If you're dealing with a lot of ongoing grief and anger (the normal things we all go through with ME/CFS), then it might be a more intimidating to a man than if you've come to a point where you've made peace. If you're calm about it, it's more likely that he will be.

The other thing is that he might not have heard of ME/CFS, or if he has he may not really understand how it affects you. It may take him a while of observing you to really get it. So, your patience can really be important.

I guess when you tell would depend upon a lot of stuff. Is it a blind date situation, is it a friend you've developed feelings for? I don't necessarily think being forth coming would freak a man out (it depends on the guy, again! some might appreciate it) but it might be a good idea to hold off so that he can get a sense of your personality before having to deal with the implications of your illness.

I realize I haven't really answered your question! oops. But maybe I've given you some good things to think about!

Misfit Toy

Senior Member
I have lost almost all of my self esteem. The illness and what it does to me has done that. I can't sleep in the same bed as someone else, I am too wired and every little movement causes me to not sleep. I can't have sex all the time due to chronic UTI's. I have IC. The stress of dating alone can make me sick. After several boyfriends that didn't work out (and I broke up with them all) I have just begun to think that I am impossible to be with. I am not really and I know this. I am scared of being told that something is wrong with me because I couldn't keep up with the man sexually. The last two I dated were emotionally abusive and I am still bruised. I was left feeling unlovable. I broke up with both of these men but because I was always told how I didn't please them enough. As the last one used to say, "when will my needs ever be met?"

I used to hide my illness, but I almost feel like "get it over with and be forthcoming." I am not my illness, but my illness greatly affects who I am. This weekend, I have been so sick and an emotional basketcase (period coming on, a horrible reaction to a lead shot) there would be NO WAY in hell that I could hide it. NONE.

I am damaged, I think. I want someone and yet I want space. I "need" space in order to recover because I can't take too much stimulation.

And yes Rebecca, I am more into casual and not casual sex but not like, "hey, I want a wife, maybe you will be that!" I am on the fence about marriage.

I think one of the reasons I have to say it from the get go is because I have to let them know that I may have to break plans due to my illness and how it affects me. Otherwise, the guy thinks there is something wrong with him or that I am playing hard to get when I am really just unwell. Then, they try chasing me more, which then adds to the stress. Guys always fall for me based on looks....RIGHT AWAY. Then, no matter how many times I tell them I am ill....they still don't get it. When I am in better, I am good or great...when I am really sick, I can be like a gremlin.


Hi Spitfire, I read the whole thread on dating last night that was started back in November and responded to some things in there you said... that I could totally relate. Ive had to take time off to get MY life in order financially, etc. I was hoping a man would take care of all that for me. It's a difficult thing to put a roof over your head when you're ill and pay the bills.,etc. SO, doing that all on my own has been a great accomplishment. Now I dont need a man for that.

Then I went through a phase prior to getting my own act together where I was SO mad at men, cuz I had three that where good with being friends with benefits. For quite awhile I felt that that was all I could get....that that's all I was worth, I guess. Then I said bull to that. I wanted someone to love me and vice versa.

BUT, there are men who I have had in my life, prior to those who wanted to be friends with benefits, that really cared about me...3 in fact over a 7 year period and I was really sick off and on during these times and even got fired!!! These men were so good to me. For reasons I cant get into, they werent right for me long term.

Anyway, I didnt tell men right away. I would just say I get tired easily. I think they thought they could help me. They all were good men. And they did their best and got me through some hard times. Im kindof glad I didnt settle back then (Ive been sick 20 years), cuz it's been huge to stand on my own two feet now inspite of this illness, creating a lifestyle that fits my illness.

BUT lord, the angst. I was in a such a bad place last night....the lonliness..Im a passionate, affectionate woman and Ive had to shut that off...but what a waste of who I am and what I could give a man...

Now Im worried that if we are sick with XMRV, we might be contagious....that will really screw things up. As the HIV community had to band together, we will too, and find connections with each other.

So I am stumped. I would say, put the subject on hold, until you can strenghten yourself. Whatever that means to you. However you do that. Reducing stress is so crucial.

For what it's worth, Im in this dilemna too, and feel for you and am looking for my answers as well. I put the whole man issue on the shelf for 5 years and now I just cant deal with the lonliness. It's not healthy. And I know I feel so much better when I am with someone I really like and we can laugh, go for a ride,'s just so good when that happens.

Some men like to be caretakers, but hopefully they are not controllers.Amazingly the men in my life, early after my divorce were like that...they are out there.

Much love,



Patient in training
Donna, this was a very sweet answer and I concur with it all.
Sometimes for some reason we really really want to be in a relationship but it may not be the best time to attract someone that will be right for us. I mean how can a parrot that is molting, missing a few feathers and recovering from an infection attract a mate? I would suspect he will spend a couple months preening his feather and getting beautiful and shiny so the ladies spot him and fight for him!!!
In our case, the way we see it, what we have to offer, your inner garden, your self esteem, matters more than anything. And sometimes it takes a few months to make the garden bloom.


Senior Member
USA: Deep South
can relate

Wow, spitfire, you have expressed many of the feelings I have. I currently am able to work part time, but don't seem to be able to make any further progress. In some ways I am lonely, but the truth is that most of the time, I'm happy to be alone.

I believe that the happiest relationships evolve, free from the expectations/demands of dating. In other words, we meet people when we do the things we like to do. The problem for us, of course, is that we are often UNABLE to do the things we would like to do and our opportunities to meet people are very limited.

I'm pretty much resigned to being alone. It has its ups and downs. We can only try to "buffer" ourselves by maintaining interests in things. It is said that "interested people are interesting." I agree with this and just try to follow my interests and stay tuned into life as much as possible.
Port Aransas, Tx, USA
I think all of us who are single with ME/CFS have this same problem. I know I do. I'm a 42-year-old single woman. I have to live with my mother! I can't work. My daughter is 19 and on her own. I have made peace with my illness. I try to take things in stride because what good would it do if I didn't??

I miss the comfort and compansionship of being with a man who cares for me, loves me, is excited that I am in his life. I've had my share of friends with benefits....I don't want to settle anymore. I'm in the same boat though...I don't have the energy to go out and meet On the rare occasion that I do, I pay for it for days afterward.

Here's my thought....You have to find peace within yourself before you find peace with someone else in your life. If you are in a tumultuous state of mind you aren't going to find someone who will stand by the *real you* -- the person who isn't ruled by her illness and accepts it. When you find that peace, I know (I have to believe) that someone out there will be able to see the inner beauty in us and realize that we are worth fighting for illness or no illness.

Oh, I hope that helps someone......It has helped me get through my dark lonely times. My heart aches some days longing for companionship, tenderness, sharing of dreams..... We will get through these times. We just have to stick together....listen to each here for each other. It doesn't replace warm arms around you but it does help you feel like you're not alone and like you're not going crazy.

Be at peace and Be well