In a New York Times op ed piece, a psychologist decried (for many reasons not relevant here) a website offering consumers the opportunity to rate their mental healthcare providers.

Either it’s a lousy psychologist afraid of being outed, or one who hasn’t joined the digital age.

Woefully under-prepared for the speed at which cybertechnology change happens, many providers of mental health and the agencies that oversee them are dancing as fast as they can.   It comforts me in some small way that I’m not alone in being overwhelmed, and for the same reason.   While the “digital natives” who have been born implanted with a microchip  “get it”, the “digital immigrants“, like me,  don’t.  When Dr. Ofer Zur, a prolific writer, educator and speaker on multiple topics affecting the mental health professions, joined his daughter in conversation on the challenges natives and immigrants experience when they’re together, the generation gap widened to a chasm.

There is no worse feeling, no more powerless feeling, than trying to be understood by someone who speaks another language, especially when you have something important to say.  It happens within and among  institutions — government, education, healthcare, religion, etc.  This is “he said/she said” on a  scale bigger than the ones they use to weigh trucks.  Essentially  the same thing is happening:  a lot of misunderstanding, not understanding, or poor    understanding, all increaseding in direct proportion to complexity.   For example, a doctor who doesn’t stay current on advances in medicine is at a disadvantage — not just in acquiring patients, but in saving their lives.

So too in relationships.  Each partner attempts to navigate situations in the here-and-now as well as at every life stage and for each of the challenges that comes.  As situations and life stages change, so, too, must the relationship.  If it doesn’t the relationship risks the stagnation brought about by misunderstanding, not understanding, or understanding poorly.  On any given Sunday, partners are negotiating their own stuff as well as the stuff of their relationship — stage-wise and situation-wise.   Life becomes harder when factors are added that’ve been hanging around for lots of Sundays:  differences in age,  life experience, style, abilities, beliefs, perspectives, family of origin experiences, and so on.

Couples who don’t (or won’t) budge from using an individual point of view when attempting to solve a relationship problem, damage both themselves and the relationship.  Of course, that applies only when (as a colleague says)  you give a rat’s ass in the first place.  The point is that the coupleness is a different entity that each partner, even as it contains them both.

For couples to create a space where they can listen and speak creatively requires conscious effort.  Conscious, mindful effort.  Couples need to become vulnerable to the other if the relationship is to survive, or even form in the first place.   It’s very hard to be vulnerable in our world:  there seems to be more at stake.  At least from  50-50 standpoint.

Which leads me right back around to being a digital nincompoop.

My world is changing, has changed, and I’m overwhelmed by it, which isn’t helped by my own version of what a friend experiences as “chemo-brain”.  Invisible disability affects my ability to “immigrate” and that affects my ability to be successful in a world of mail that is hot, software that isn’t very snuggly, and a file cabinet that’s supported by a cloud.

In a cyber-digital world where I too often fail to accomplish what I want to, having relationship success becomes more and more important.   It’s a fall- back after an unsuccessful hunt in the cyber jungle or a  live word that goes beyond “cancel” or “connect”.   It’s worrisome that, as the chip-implanted generation takes over, the importance of feeling connected in relationship may be too much work and less necessary for self-esteem.

Twenty seven years ago, when David and I first married, among the things I heard him say was that he wanted “an independent woman” as a wife. To someone like me, who has m.s. and who learned in childhood that playing “the victim” was the way to being loved, that description of “independent” was scary. Not because of working, because I always have, but from the standpoint of not being loved.

Over the years, I’ve come to learn that David’s definition of “independent” was far from what I had thought. Assumptions are relationship killers; being a psychotherapist doesn’t always help what’s personal. But worrying about it and trying to deny my disease because of my assumptions about “independence” led me to a surprising conclusion. I am independent when I accept responsibility for my health – maintaining it or mistreating it.

I was really mistreating our marriage by not practicing self-care as I couldn’t possibly be a good partner if I was sick.

I gave David the burden of my progressive disease instead of doing what I could about it myself. That included all of those self-care things I’m lousy at, like not overdoing it, slowing down, and treating myself well, like eating more than 2 cookies and a cup of coffee for breakfast.  And especially treating my psychotherapy clients better than I treat myself.

David gives me unwavering physical and emotional support, even though he’s stopped trying, bless his heart, to save me from myself. I never listened, anyway.

In the process of leaving me to my own devices David’s unwittingly given me the best, and most terrifying gift of all:  the responsibility for being myself. 

The note felt angry.  Certainly blaming.  Obviously rude.

I understood because I’ve left that kind of note, but only on windshields without placards.

No takers when the manager of the Goodwill store where I was shopping made the following announcement (I had to bully her first):   WILL WHOEVER LEFT A NOTE ON THE CAR OUT FRONT PLEASE COME TO THE FRONT OF THE STORE.

I wanted to have the opportunity to talk with whoever judged me without knowing me.  I have multiple sclerosis, at the point in the disease’s progression where symptoms are more wax than wane.   I would tell them about how invisible, or hidden, disabilities sometimes do necessitate a handicapped placard even though it might not appear so.  I’d give examples, like heart disease, diabetes, neurological diseases, RSD, fibro, cancer, adding that the list is a long one.

I wished they’d been behind me at the Dollar Store when my bladder acted up.   Or in the same store as a client of mine who described stumbling into a  display before  being escorted out  as a drunk.  Maybe they could explain why strangers offer me assistance when I think I’m moving just fine.   What did they see that the Goodwill shopper didn’t?  If I had to guess, it would be because I was observed going into the store, rather than when I was finished; big difference.

Reminded again of the struggle in having an invisible disability, I’m sad that in addition to symptoms that are now here to stay (tremor, swollen extremities, multiple falls, poor bladder control, loss of balance, difficulty swallowing, nerve conduction impairment, word finding difficulty, holes in my memory) I’m still having to explain myself.

The irony isn’t lost on me.  I get it that I overdo when I feel good.  I get it when clients tell me the same thing, even down to wondering if they’ve made up the whole disease-thing after all.   I’m crushed each time what I know to be true really is.

The toll is great, paid in relationships confused and frustrated by the two messages the invisibly disabled throw out:  I’m fine/I’m not;  help me/don’t.

Invisibly disabled by multiple sclerosis for more than half my life, I’m glad there’s people looking out for the fair use of handicapped parking.

Mostly, I’m delighted I looked good enough for someone to regard me as normal.