CWD (Couples With Disabilities)

Congratulations on being the first person to comment on our blog! It's a pity that ethical standards prevent our rewarding you substantially. (Heh.)

Aside from the most severe physical ramifications, perhaps the greatest issue facing disabled persons and their caregivers is the desire of medical professionals to indulge in out-and-out discrimination against them. Disabled people get a lot of help from their practitioners, but there are two sides to the coin, and the other side isn't a pretty one. Perhaps the most ridiculous prejudice is the campaign to "decide" that it's good clean fun to work out on fat people, young and old. WLS continues despite having been debunked again and again, and the only reasonable explanation is that someone thought it would be cute just to start killing fat people outright and someone else pointed out that someone could make a lot of money that way.

A more subtle form of discrimination is observed in practitioners who refuse to diagnose fat patients, implicitly or explicitly. The stories of people whose relatives have died from one undiagnosed condition or another because someone in a white jacket "decided" that their "real" problem was that they were "fat" and thus needn't be checked for underlying issues have been stacking up for years. (Perhaps these stories are considered epistemologically invalid by "research professionals" because they are not firsthand reports; God knows.)

I say all of this to allow me to say two things: (1) I'm sorry you were conned into WLS, and (2) I'm glad your thyroid was removed while it still could be. (See, I follow people's links if I'm in the mood.)

to discuss the issues we have faced as chronically ill folks. It is true that we cannot address all disabilities, nor all coupling issues, but what we hope is that the experience of others will show up in the comments and a great discussion will break out.

Our point is that we cannot find anything, anywhere that recognizes that two people can be sick and/or disabled at the same time. For the past three years we've been looking.

As far as the seek-out-help advice -- yes, can be good advice but doesn't solve all issues. We happen to be a childless couple that lives far from family, so we have had to do a lot of things alone. We have hired help and sought support in many ways, but there are still things that you have to work on together and outside intervention can only go so far.

I don't talk about my "invisible disability" openly in meat space. As such, I expect people see me and Pattie travelling together and think, since she is the one on a scooter most of the time, that I'm the "healthy one" and Pattie the "disabled one." The main difference from your situation is that if I'm too sick to be out, Pattie winds up having to get around on her own. She has become adept at it after two to three years of scooting, but it does make things more convenient when we can go together and complement each other. :)

The issue of career path was one we hit hard in the blog entry. When we decided to do the blog, we noticed a dearth of resources on the Web dealing with disabled couples, and we noticed a dearth of resources constructing the disabled/chronically ill person as a competent individual to whom a random event had happened and who would like to get on with his life and his livelihood. The preoccupation (or the notion that the disabled person should be preoccupied) with medical issues to the exclusion of all others and the subtext of non-fatal conditions as establishing a person as being "not really disabled" were widespread. You can probably guess from our tone in the blog entry (and in this remark) what we thought of that.

The title of our blog entry was meant to be darkly humorous. It would be more darkly humorous if it weren't true, I suppose. In particular, your comment about responding to the imposition of a disability upon oneself with "rage" for the reasons you did struck a responsive chord in me. I brought to the marriage not only the devotion of the lover but considerable training in administrative matters. I had no trouble seeing the relevance of my studies to the project at hand. I was sufficiently diligent about working for our combined success that I inescapably found a PROFESSIONAL interest in seeking its fulfillment! When I became ill, I was beset by such anger at myself for falling down on the job that "rage" seems a poor word for it. "Contempt" would be better. Pattie has helped me to see the issue of disability more clearly, as being nobody's fault and as no reflection on me, either personally or professionally.

Also, does the caregiver in a one-disabled-spouse marriage hate himself or herself more than a little if he/she gets sick eventually? The illness keeps the formerly-well spouse from seeing to a responsibility, one which this spouse has done consistently in the absence of illness. To keep someone from the accolades of a job well done is enormously prejudicial, and we rightly react to such treatment, when we are so obstructed, with rage. Also, there is the personal, and interpersonal, element to consider: the relationship depended on us, the former caregivers, and we have failed. We have not just dropped the ball, we have dropped the loved one. The horror and self-hatred can easily supersede anything as sterile as "professional pride." We often find out that even if the caregiver role wasn't that pleasant, it was something that defined us, and we were happy that it was. We know ourselves to be the type who could handle the role, and the new disability keeps us from being recognized as such. It lies about us shamelessly, but when we resist the lie and attempt to retake our former role, we find how solid the case of our opponent is. Who then is left to hate, if not ourselves?

We reasoned when we conceived of the blog that (1) there was nothing out there covering disabled couples, married or otherwise, and (2) we couldn't be the only one. I am pleased to hear from you that you strongly suspect we were right on both counts.

Mental illness can drive you crazy. An obvious problem is how as a practical matter to administrate your own treatment and your own way through the life course (or "courses," for those who design their own) given that your perceptions are perhaps subject to distortion. One way is a partnership with someone whose abilities complement your own, and your comment about combining "wellsprings" is especially touching and valid if one considers it a metaphor for mental illness. This complementation is as valuable, and as sweet, with mental illness as with physical illness. I hear disabled persons called "differently abled" often, and the repercussions are more relevant in the context of interpersonal relationships than individually, with the possibility that you can do what your partner can't. Organizations use a combination of minds to address administrative issues and invoke division of labor as a matter of course, and entreaties that one should be expected to "stand on one's own" and be "self-reliant" are not necessarily optimal in this area. The implications for couples dealing with mental illness are obvious.

Thank you for seeking out the blog. While we're at it, thank your friend for passing on the news.

You can "help" your disabled partner in a dozen different ways even if you're not a health professional. The struggle is always a shared one, and to the extent that you focus yourself and yourselves on dealing with the prejudice, discrimination, and outright fraud that can accrue to disabled persons and their caregivers, you are helping with perhaps the most important aspect of all. Moreover, every time you collaborate on other issues in life, you free up time and energy for each other to deal with issues directly and indirectly related to disability and chronic illness. It's an attrition war.

There is no need to blame yourselves or each other. To gear up substantially for the ensuing struggles in life is a praiseworthy start.

I hadn't thought about the dynamics of triads or vees with chronically ill/disabled members. It seems you would be more resilient to such misfortunes, for the same reason that riding a tricycle is easier than riding a bicycle. However, if all of the members start out chronically ill or disabled, that does invalidate my hypothesis to a degree.

You mention the incompetence (and malice) of the medical practitioners you have encountered due to weight issues, but it appears that persons participating in active multiple partner relationships face no less prejudice in the outside world. It appears that you are not allowed to raise the "poly" issue at all within North American Anglo culture, let alone to self-identify. And yes, that is prejudice, even and especially when it goes unmarked or "passively" taken as given. I do not suggest that you have not developed PTSD because of your mistreatment at the hands of the medical system; I suggest that another no-win situation is that once you leave the doctor's office there is nowhere to go to take a respite from the trauma. I would call that a vicious cycle on another level.

An effective exception is often found in the ability to set up close relationships. Being able to do so with as many people as is personally desirable is optimal. It follows that your tricycle may be the best weapon you have against such pandemic prejudice. Don't think your opponents don't know it.