There can be no doubt that the problem is far more widespread than even two or three decades ago. The medications are so much improved; medications that will increase lifespan. However, what they don’t do so much is address issues of quality of life. Mainly, they slow — but don’t stop — the chronic and progressive deterioration. In absolute terms — and forgive me for what may seem cold and harsh — what used to be a five, ten, or twenty year marital issue, followed by a death and remarriage, has been turned into one that can be thirty, forty, or fifty years of steadily increasing difficulty from a starting part that is pretty dreadful, when one’s partner is diagnosed with MS, rheumatoid arthritis, lupus, scleroderma, Parkinson’s, blah, blah ad depressing nauseum.

You make some excellent points above. Yes, we are sexual creatures from the moment of birth to the moment of death. Yes, we humans are endlessly creative. Yes, sex can be defined more broadly than coitus. But the best point of all that you amke — I hadn’t really mulled it until you made — is the lifelong grief of watching the continual deterioration of your partner; the closing of the walls on his/her life (and your own!) like some sort of diabolical torture chamber, until you are boxed, boxed, boxed in a square so tiny that you wonder how you ever allowed yourself to get there. It is in some ways qualitative different — I am not saying worse, mind you! — than the situation of a Christopher Reeve, who had an accident, became paraplegic, and then he and his wife had to deal with it. There, I suspect there was time to work through the Kubler-Rossian stages of grieving, ending even with acceptance.

I think it is important for health psychologists and sex therapists to come to terms with this: With chronic and progressive illness? The healthy partner is at the first stage of grieving all the time, because there’s nearly always something new to grieve. One day, your partner can pull his/her underwear up alone. The next day, the person can’t. One day, his/her hand can shape itself to touch your clitoris or penis. The next day, it can’t. One day, your partner can actually get in the bathtub with you and light some incense. The next day, s/he can’t. When it’s gone? Dr. Buehler, it is gone forever.

I think humans are designed to handle a certain modicum of grieving. Beyond that? After years and years? Decade piled upon decade? It becomes crushing, especially when one is in her or his forties or fifties and can look into the future and see what’s coming. More of the same. Only worse. Besides. grieving is not sexy. And being grieved for is not exactly sexy, either. Yet the grieving is inevitable. If you don’t grieve? You’re in denial!

In my own case, and I’ll be brief because this blog is yours not mine, and my individual sitch is interesting only to me — my partner was been smashed by a panoply of autoimmune disorders, including scloderma, Sjogren’s syndrome, rheumatoid arthritis, and fibromyalgia. A little research will show you that this syndrome of multiple auto-immune disorders is getting more and more common.

One of the AASECT therapists we worked with had a background in family therapy. The other had a specialization in health psychology from a top twenty Ph.D. psychology doctoral program. Both worked on intimacy as well as sex issues with us. I can tell that intimacy when you are lifting another’s underwear or injecting their medications, and your marriage sticks together, is not so tough to achieve. Decent, life-affirming, satisfying, carnal sex? Where at least one of the partners is physically healthy, active, and fully vibrant, and the other is in a slow, steady, and painful long-term deterioration before the first partner’s eyes? Yikes.

You may well be right. That a team effort, involving physician, nurse, physical therapist, and sex therapist, could up the quality of the couple’s sex life. Yet I think you forget that the couple has a team effort underway involving many of those same people just to get from dawn to dusk. Not to mention psychotherapists for her, for him, and for — in the best of all possible worlds — the two of them. Not to mention household help, so that the well spouse doesn’t have to shoulder a hundred percent of the caretaking and housemaking version a hundred percent of the time. (Parenthetically, though this is not my situation, imagine trying to pay for all that help that on the salary of e.g. a teacher and a factory worker. Double yikes!). Nor does can that team address the progressive deterioration.

I am sorry if I sound pessimistic here. I am just trying to provide you with some real life information and real life guidance.

Ultimately, it comes down to a brutally difficult decision. You know as well as I do that upwards of 75% of marriages involving one spouse with a chronic illness fail. Three quarters. I suspect — I can’t be sure, but I can guess on the basis of my experience — that many of these marriages founder on the twin shoals of a barren or mediocre sexual present, and the ominous promise of the days, weeks, months, years, and decades to come.

Does one stay, or does one go? How does that square with one’s core values of fidelity, of loyalty, of a loathing for betrayal? To what extent does a pursuit of one’s own happiness trump a commitment made? To what extent does the commitment made trump one’s own happiness, when that commitment is for more of the same, only chronic and progressive?

These are the issues all of us well spouses grapple with on a daily basis.

If you’d care to write more, I’d be honored.

Y