Thank you for this thread that I just found and read completely. Many of my thoughts and feelings are echoed here of course. And in the amazing NY Times piece.
There are sayings that you can't be loved until you love yourself. I think that is a big issue for me. Perhaps you can't love another until you love yourself either.
I've struggled with having them understand. For a long time that's what I wanted in a relationship. After a while I decided I don't need that. But I guess I'm back to needing it, to some degree. If they can't believe I am ill, then it feels like they are calling me a liar to my face constantly. Most people are in the middle somewhere. They are sympathetic and believe me when I say I need to sit down, etc. They believe me that yeah my back aches or my head hurts. Yet they believe it's just because I am overly sensitive, because I'm not sleeping right (but the illness is what makes me sleep all screwy) and it does hurt. I don't know if I can stop that from hurting.
I am afraid of sounding like a snob here or, I can't think of the word to describe it. But my biggest problem is not wanting to settle. I should just settle, but I don't know that I can. I have this unbroken spirited part of me I guess. I mean, that might be more heartbreaking to me than anything else, if I just go and be with someone without them being a person I truly love in my heart. I don't quite know how things will turn out for me if I don't "settle". As I get older, I am getting more concerned about my wellbeing. I had a counselor who understood chronic illness and who really wanted to see me get married to a good guy. Someone who would then take care of me for the rest of my life, even if I got worse physically.
I know people who would do that for me (at least it seems so), and they would be positive and happy despite all the hardships we would face. I feel stupid for turning down opportunities, but I don't want to drag someone else down for one thing. It guess it works okay if I save up my energy for my partner, and when they are at work I just rest the whole day and do nothing, but I don't like how that feels, that when they are away I am this fatigued depressed shell of a person, who doesn't do anything on my own. The biggest thing is I want them to be like a soulmate and I guess I am not a whole person and it's probably nearly impossible for me to ever have that feeling with someone. Or, like Michelle said, I am attracted to people who... I don't match with (anymore). I had to learn that the hard way too. One guy is so sweet about my limitations and smart and everything, I wish I could just fall in love. I don't think you can make yourself do that. If so, tell me how.
But the sad truth is, I probably could fall for him if I let myself. I just don't feel like that's right. I am not the kind of personality who wants to go and let a man take care of me financially. I need it, and kind of want it but only because I am sick. So what happens if I go marry this kind person, and one day I get cured. Maybe he spends his money to help me get cured. Maybe I'm a terrible person, but then I would be in a bind. Being cured would change who I am, and I would probably regret that I was married and with someone who is accustomed to the old me. I mean, this guy in my example, would love if I was cured and live would be fun for both of us, it's just... I don't know. I feel like I've missed out all my life and it would be sorta like marrying the first person you ever had sex with and later just wondering what it's like.
I like meeting people online initially. When it's email and IM, people are used to discussing more personal stuff sooner. And it hurts a bit less if they just decide to run away and ignore you, IMO. Since you haven't met them for real yet. Actually I find the best part is that they can learn some of the best things about me in writing. They learn it before or near the time they learn about the negatives. Lessens the impact?
I was in a relationship with someone else who has similar illness to me. Emotionally we could understand each other in that way, but it was horrible overall. It sounds nice that you could both rest in bed, and then when you have energy you can do something together, but it doesn't usually work out that you're on the same schedule IMO. I did hear some couples got on a similar schedule of ups and downs. My experience was more like, when he was well he would insist on needing to go out, and I would have to go despite being tired. Then when he was down, I was totally bored. When I wanted sex, he was too tired.
Anyway, his story has a happy ending. He fell in love and got married and it does make his life better. Not a cure, obviously, but having someone who is your partner in life, by your side, is huge. He is lucky, she is apparently one of the rare ones who can understand and have the right balance.
I find it hard being around someone who is in pain or sad. It's how I am. Somehow I find optimistic people in general. I guess I weed out the others. Some of them think they're optimistic, but they still complain a lot. I'm negative at least half the time. I do better with positive people.
You know, wouldn't that be so wonderful for a partner to have helped us get better? A friend of a friend is a lot better now that she found a great partner. Maybe her fatigue had a lot to do with nutrition, stress, etc? I think love and support does make a huge difference. The right kind of understanding and help. The wrong type obviously makes us worse.
If you are going to date someone ill, possibly better to date someone who is ill or handicapped in a different way from us. They would know how it feels to have to give up some dreams, but probably be more consistent and able to support us. As long as they didn't think their illness was much more real and important than ours, obviously.
I think it's good to have cuddle friends, massage friends, etc as much as possible.
True, dating is hard for healthy people. Some might not have a health condition, but they have other issues. A lot of people start to accept that everyone is going to have something negative, so why not a health condition. So many people have ADD, depression, anxiety, alcoholism, are workaholics, etc.
