See Not, Hear Not, Speak Not: Three Faces of Denial
We, the people with MS, in order to form a more perfect union with our sanity, sometimes choose the irrational road to self-preservation by denying the scientific evidence of our disease.
Denial re-establishes justice, insures domestic tranquility, provides for the common defense of life as we knew it, promotes the general welfare of our families, our work, our home, and our self-concept, and secures the blessings of liberty to ourselves and our posterior ends.
Denying a problem exists
It works for a while. A Multiple Sclerosis diagnosis tips the scales of justice with a vengeance, so our only recourse is to restore the balance, even if it means pressing our thumbs on the scales. Dishonest, yes, but integrity is only for those who have not suffered. Once we’ve suffered our first attack, the con is afoot. If we want to keep our jobs, it is better to look good than to feel good. Our bosses don’t want to hear problems, they want to hear solutions. The sin of omission accomplishes both. If you deny a problem exists, then you don’t have to find a solution.
A delay in diagnosis
I had the luxury—or the misfortune, depending on how you want to think of it—of a delay in my own MS diagnosis after my initial flare-up. A six-year delay, to be exact. It was easy to be in denial in my case. I recovered almost fully two months after the flare. I was told that since I was also suffering from a severe upper-respiratory virus, it could be a one-time viral autoimmune glitch that would never happen again. We’d have to wait and see. I didn’t mind, really. I wanted to believe it was a viral anomaly that would never happen again. I didn’t want it to be MS.
Waiting for years
I was given a diagnosis of cervical myelopathy of unknown origin. In 1999, that was what they called “close, but no cigar.” Later it would be called Clinically Isolated Syndrome (CIS) and the patient would be started on a disease-modifying therapy. Sixteen years ago, injectible drugs were the only kids on the block and you couldn’t take them without first being conferred an MS diagnosis. To get a diagnosis, I had to have another flare and new lesions in another part of the CNS. I waited five more years for that to happen, followed by an additional year of retesting. An abnormal lumbar puncture was the determining test. It convinced my neuro and it convinced me. Fulfilling all the criteria for a diagnosis ended my own denial as well as the denial imposed by convention.
Denial imposed by convention is that made by institutions: insurance companies and the medical establishment that withhold potentially valuable treatments from those like me who did not fit the restrictive Poser criteria of the time. Institutional denial prevented me from having a shot at early-stage therapy that might have made a difference down the road. Or maybe not. I don’t feel strongly one way or the other. I’m not stewing about it. That is one upside of denial. I don’t engage in what-ifs. They aren’t measurable. Besides, you could drive yourself crazy with regret, anger and resentment if you climb onto that merry-go-round. And yes, I’ve had my moments with those things. But only moments, thank goodness.
A third form of denial is a deceptively simple one. We can deny that a statement is true. It can be mere contradiction. It can come from pure rebelliousness or a thoughtful re-examination of one’s life narratives.
For example, how would you respond to the claim “you’ll be in a wheelchair within ten years?” If your doctor made that remark, would you believe it? If some able-bodied joe on the street said it, would you react differently? Would you respond rebelliously in either case by thinking Oh yeah? Watch me. I’ll be pole-dancing in ten years while you’re groaning about your arthritis! Or is your general reaction to people’s judgments of you a simple knee-jerk Kiss my ass, Bozo. Nobody has a crystal ball. Mind your own business.
A thoughtful re-examination of our life narratives is ongoing. It can serve as an attitude check, a benchmark, a comparison between the standard you’ve been waving around and a new banner that better reflects your present beliefs. I always thought that diet and exercise crap making my MS better was a crock. But now that I’m eating healthier and doing my stretching every day, I feel a bit stronger and my attitude has improved.
There is a fourth form of denial called—I kid you not—non-denial denial. Coined by Washington Post editor Ben Bradlee during the Watergate scandal, it is an evasive statement practiced by politicians and attorneys that is ostensibly true but reveals nothing. Since people with MS aren’t generally in the political arena, we are members of the electorate and therefore only spectators.
Denial can be a good thing. It can protect us from anxiety and reckless opinion, untruths and irresponsible judgments. If we use it to our advantage, it keeps us in the realm of personal experience as a more accurate indicator of what is true for us.
How many specialists did you see before finding "The One"?