An understandable, but potentially pain-inducing decision
Hi LB. I completely understand and sympathise with your dilemma. I was, sadly, abandoned by all my friends, one after the next, because they couldn't cope with what was happening to me. But before you leave your sick boyfriend, follow Susie's advise and learn about Lupus, try to find out exactly how sick your lover is, and then, with all that info, try to genuinely assess your own ability to stand by someone who will not be able to do all that he could when you initially got together.
If he cannot go out, talk together about your own need to do so, and find out together if he can allow you to do those things he can't with your friends, instead of with him. Can you make up for that by finding fun ways to stay indoors? I bought a TV and VCR for the first time when I got sick, after years of refusing to even acknowledge the existence of either, but this made it possible for my daughter and me to still have dinner (delivered) and a movie without leaving the house. Are there games you enjoy, or puzzles? I don't know how old you are, and how much you love this man, but if you do indeed love him and don't want to just give up on the relationship, you'll have to think, together, of interesting things to do at home, while still living your own life as freely as you can. Chances are he's too tired to feel jealous of your more active life, and as long as you've come to some understanding that this isn't about "cheating" on him, just going out with friends (and if it's not that, you absolutely need to talk frankly), then I can't imagine him wanting to tie you to his bedpost to force you to watch him sleep! Can you have fun without a boyfriend at your side? This is definitely easier as you get older, but perhaps you have enough good friends that it won't matter.
Your boyfriend is probably feeling robbed of his life--depressed and scared, too. While not a fan of the analyst Freud, he certainly hit one nail on the head when he said "Love and a useful occupation are necessary for happiness." That's pretty close to the quote, if not exact, and as we lose our usefulness, we beg not to lose love, too. Our biggest fear as we get sick and less capable of living "normally" is that we'll be left by our loved-ones. For both your sakes, start by evaluating how much you love him, then try to get creative with ways to be together without sacrificing your own freedom. If you don't, and just run away, you may regret losing the love he gives you because you acted too quickly. You'll both lose love, and that would break two hearts, not just one.
Sometimes we have to dig deep to find our ability to love in the face of unpleasantness, but there was a time when to abandon a sick loved-one would have been unthinkable, and in most cultures, this is still the case. But in those cultures, everyone around pitches in--the proverbial 'villiage' that is also required to rear a child. And I remember how I became a Healer. I was 10, and though my feelings for my mother were incredibly confusing and ambivalent (for reasons I needn't go into, but you can make a rough guess), when she had to have debilitating back surgery and was laid out in agony, requiring constant attention, I had to lay hot towels on her back in order to minimize the spasms she was wracked by. I remember so clearly burning my hands on these great, heavy towels, and how furious I was at having to stay home from school to nurse her, but then, as I laid the first towel on her back and felt her whole body relax, I realized that by this simple act I had eased her pain; I felt filled with love and gratitude that I'd been given the opportunity to experience this incredibly powerful moment of spiritual awakening, and from then on I took care of her with the sort of love I hadn't even known existed--again I was 10 and not a big fan of the person I was serving. But I have not stopped since then--I went on to become a life-long traditional Healer, and my passion to be one stemmed from that moment.
Now, I don't assert that you'll experience a similar epiphany, nor discover that your life's path is that of a Healer, but if you stand by him, you may find previously unknown capactities for loving within you. (I am not a Christian--I'm Native American and my spiritual life is in that tradition--I tell you this because Christians often say the sort of thing I have just said, in the tradition of preaching rather than sharing an experience and then merely allowing you to consider it without having an investment in your response. We say such things just to offer you the idea of a possibility--what you do with it is entirely up to you. Now that I've made that clear, please don't feel put down, all Christians on site--I've just don't want to be misunderstood myself--when people feel preached to, they often turn off. Of course, I support all those whose spirituality is primary in their lives, whatever its tradition.) Also, if you do stick with him and are well-educated about Lupus, you may be able to help by recognizing symptoms that he is too overwhelmed by to discern as part of the disease. You could also advocate for him with the doctors, who are often impatient with those Lupus symptoms that are so ephemeral that sometimes no one believes you're actually experiencing them. Or you can help when he's too sick to get himself to the hospital or doctor's office without help. If you choose not to take this on, perhaps you can choose a friend or family member to keep an eye on him. There are plenty of non-doctor Lupus sites which allow you to print out much detail for everyone to learn from.
Don't worry about offending him--there's nothing you can do or say that would be worse than "good-bye"; just be sensitive as you talk with as much honesty you can muster, inviting him to do the same. If your choice is to leave him, try to know ahead of time whether you want to still be his friend--a true one, not a fair-weather one--and if he's not too sad to take you up on that, at least you'll be one person he can count on. He'll need that, as his other friends are quite likely to just disappear without feeling your qualms of conscience or caring enough about him to really try to remain his friend under this new set of circumstances.
Good luck to both of you, and may I make the final suggestion of referring him to this or another site for support? Isolation is potentially the most fatal of all our symptoms, and I don't use that word lightly. I am currently trying to dig myself out of an isolation so complete that I can barely converse anymore. It is all too easy to fade away when you're ill. If you care about this man, at least try to help him avoid that before you leave him. But if you have to do so, don't feel guilty. Just be honest with yourself and don't sugercoat your own decision. Of course it's a "selfish" one, but some "selfish" acts are necessary for survival. And remember that sooner or later we all need that extra bit of caring from someone--none of us is immune from disease or disability. Part of your problem is that this society is not set up to support either him, the sick person, nor you, the lover who wants to do the best thing for both of you.
There may be support services available from the County or City you and he live in. Look for resources, discounts on things like electric bills, housekeeping and cooking help, and transportation specifically for the ill/disabled.
Again, good luck, and be strong. I admire you for your honesty in posting this here, where you could easily have been ignored or attacked by offended sick people. You obviously have guts, enough to try to make the situation better for him, whether you stay or not.
P.S. I just noticed that you're in San Francisco; I'm just across the Bay, so email me if you want to talk.