Think back to the beginning of this whole ordeal, back to that whack-a-do diagnostic disease pitch your docs threw out there that caused you sudden major brain freeze: Two or more lesions in brain and spine: Check. Abnormal spinal fluid: Check. Iffy visual evoked potentials: Check. Characteristic presentation of clinical symptoms: Yep, several. Pretty sure it’s Multiple Sclerosis.
We’ve all been there.
Or perhaps you are at the beginning of this nightmare right now; it’s not a distant memory, you’re there as of this moment, in it up to your eyeballs, and literally so if you happen to be suffering from optic neuritis. That son-of-a-b!$%h MS can hurt as bad as thrusting an ice pick through your eye socket. Or maybe you’re a little blind in one eye and having trouble reading this. If so, come back and try again later after things calm down. There’ll be plenty of time for you to let the dust settle and decide how you want to put words to this thing, how you want to think about it, feel it, and then talk about it, to others and to yourself.
Unless, of course, you don’t want to do any of that at all. Maybe you want to wave your magic wand and presto, it’s not a thing anymore, just a bunch of scary words some doctors spewed. Neurological. Autoimmune. Progressive. Incurable.
So what harm is there in denial? Mind over matter, you always say. You’ll just will it away and then you won’t have it anymore. No harm done, you think. And no consequences.
But let’s say you’re an athletic young man just diagnosed with MS. And let’s say you are fortunate enough to have sufficiently recovered from your first episode, or your initial symptoms weren’t severe enough for anyone at work or school to notice. You tell no one about your diagnosis, not even your closest friends and family. And it works, no one even suspects. Except one day a friend asks you to run a 5K race. You can’t turn him down any more easily than you could show unmanly indecision or clumsiness, so you decide to train in private. After a quarter of a mile you start limping; at a half mile you trip and fall, badly scraping your shoulder and hip on the rough pavement; at three quarters of a mile you develop bi-lateral foot-drop from a sudden pseudo-exacerbation; you stand in the middle of the road, rooted to the spot like a squirrel paralyzed by the sound of car tires, and you didn’t bring your cell phone, it was just supposed to be a short jog. You’re hurt, bleeding, and worse than that, you’re stranded until your body temperature drops a couple of degrees or until a car comes along, and you pray that either your body hits the 98.6F mark real soon or the driver sees you in time to slow down and swerve to avoid knocking you clear out of your Nikes.1
It is a possible “aha moment.” You might rethink this whole denial thing and open yourself up to confiding your condition to those closest to you, for your own safety, if anything. Or not. Maybe you think you’ll be lucky enough to let it ride for, say, five more years without a crisis that might expose the disease and with it, your secret double life. So you shrug off the running incident and the pseudo-exacerbation and play the odds. You decide to avoid physical calamities in the future and put all your energy into working extra hours. And you’re really pushing it because part of your little denial scheme is to take no medications at all. If you have the relapsing form of MS, then you have chosen to forego any disease-modifying therapies that might improve your odds of staying on your feet. If you have the progressive form, you’ve refused any symptom meds, you’re going to tough it out. Because being a man means not needing or asking for help, not appearing weak or vulnerable.
Consequences; If not now, then later. Foregoing a disease-modifying therapy, for example, could hasten your decline and dependence on a mobility aid such as a rollator or wheelchair. We think of that stuff as coming under the heading of “later.” The thing about denial right after diagnosis is that we are in the “now” part of this journey, and for most of us, remission is often complete or nearly so in the very early stages of the disease. When that happens, maybe we think we beat the devil. For good.
Regrets, you’ve had a few… So, you did it your way. You looked the devil in the eye and turned all atheist on him, shooing him away to the far end of your mind’s attic, to the same place where your MS diagnosis was wrapped in visqueen and duct tape and stuffed inside a trunk. But now you’re in trouble. Your boss called you in to his office and expressed concern about your paperwork mistakes, missed deadlines, and the peculiar way you weave back and forth whenever you walk down the hallway to the restroom. You didn’t even realize you’d done those things, but now you’re a little embarrassed about having been smug and cavalier. You start wondering if you’d made a mistake by blowing off the drug therapy your doc told you might help. You hold in the panic and try to smile, manage to tell him some story about being sick and that you are getting treatment. But you know you need to do more than that. You feel isolated and alone and you don’t want to be, not any more.
Solutions: Rosalind Kalb, PhD, vice president of the Professional Resource Center at the National Multiple Sclerosis Society and a clinical psychologist, urges that we find resources all around us for the kinds of support we’ll need and then use them to put together an MS management team, which includes our social network; health care team of doctors, nurses, and therapists; and organizations such as the National Multiple Sclerosis Society (NMSS), the Multiple Sclerosis Foundation (MSF), and the Multiple Sclerosis Association of America (MSAA).
Dr. Kalb suggests that the initial news from the physician can be so overwhelming that denial allows the person some time to process the information and think about what it’s going to mean. But if denial goes on for too long, it can get in the way of learning how to live with MS.1
Dr. Kalb further asserts that you don’t have to accept the disease, you can adapt to its presence. “People can get caught up thinking of their MS symptoms as a failure. Making adaptations, using tools, and working with a health care team — those are not giving in to MS, those are taking charge of it.”2
From denial to adaptation and disease management. If we bite the bullet and own it/show-and-tell about it/manage it, MS might not put us on such a long and lonely road.