The Importance of Avoidance With MS

Patient Expert

Denial is commonly known as the first of the five stages of grieving.  We can’t get to the final stage of that process – acceptance – if we don’t pass the four other stages, and denial is the usually the first rung on that ladder. Often, however, I’ve met people who believe they are coping well with their multiple sclerosis (MS), but are still on that first step and denying what is happening to their lives.

None of us wants to live our every day – every moment – staring an incurable disease in the face, interminably. That’s where I draw a distinction on the other side of denial and lavish in the occasional respite of avoidance.

The men with MS self-help group I once was a part ran an unscientific study one meeting. We each took a written quality-of-life survey at the beginning of our meeting. Then we all took five minutes and talked about ourselves without mentioning anything about MS. At the end of the meeting we took the same survey. The group quality-of-life score increased by over 25 percent.

By simply focusing on other parts of our lives to share with each other, we collectively and individually felt better about our lives by a significant and measurable amount.

There is a massive difference for me between denial and avoidance. While it may seem merely semantic to many, it is so much more than that to me.

Like the rumbling of a motor and the movement of a car can distract a tired child from whatever terrors keep him from sleep, or a comic film in a darkened theater can take us away from our work-a-day lives, I find it important to plan and implant times for avoidance into my life with MS.

My disease has, of course, limited the list of things I can do to distract myself. The disease itself won’t allow me to totally forget that it is there. Even while sitting quietly listening to the birds, the insects, and the quiet sighs of my sleeping dog in the garden, my MS symptoms can still be felt. But if I find the right position, the right amount of sun, and the right bird or butterfly to focus on, I am not a man with MS sitting in his garden. Rather I am just a man sitting in his garden.

Mindfulness practices such as meditation, yoga, or prayer can be helpful ways of avoiding MS for a while. It can bring the feeling of a mini-vacation or a long weekend — a moment to experience a parallel realty of calm and quiet to gird ourselves for the inevitable “Monday morning” when the realities of illness return.

It may take some of us a while to fall into (or fall for) our attempts at the mild self-hypnosis of diversion and avoidance.

Like watching a film while sitting next to an open-mouthed chewer (with an extra-large popcorn), or hearing a coach’s half-time pep talk knowing that an injury will keep us off the field, the distractions of our disease can make emersion into our avoidance difficult.

With planning and persistence, however, we can all find some level of escape from at least some of the in-your-face symptoms that set us apart from the rest of our world. And that’s just the active avoidance stuff.

Until they find a cure for MS, or any number of other chronic illnesses, those of us who have it, have it. That does not have to mean that it's the sole or number one thing on our minds 24/7. Not dealing with something, but knowing it exists and knowing we have it in us to cope, eventually, can even be a healthy avoidance.

Pretending that my MS is non-existent, a misdiagnosis, or that I am controlling the disease’s progression by subscribing to the latest fad seems dangerous to me. My preference is to understand all I can about MS, work on and stick to a treatment regime with my medical team, and keep my body as strong and resilient as possible. In the process, I’ve found it’s healthy for both me and those around me to not focus on all MS all of the time

How could that be a bad combination?