Driving with MS: A Psychological Perspective

Many of us remember the exhilaration of our first time behind the wheel of a car. It felt like freedom. Passing a driving test is often a defining right of passage to adulthood. It confers a kind of glamour and adventure. It means having independence and autonomy. It says we are strong enough and smart enough to operate a complex machine. We often use our cars and our driving ability to measure self-worth.

In a society built on a dependence on cars and our ability to drive them, driving is practical and necessary. It can feel like survival. We drive ourselves to work, to shop, to medical appointments, to socialize, to get our kids to school and play dates.

Is it any wonder that we don’t want to stop?

For individuals with MS, the decision to modify or stop driving altogether is especially difficult.  Changing driving habits or losing one’s ability to drive is a reminder of what the disease takes away - another milestone in adjusting to life with MS.

Modifying or stopping driving can cause feelings of grief associated with a loss of one’s independence, health, identity and pride. It forces lifestyle changes that take getting used to, including adjusting daily activities, asking others for help and accepting a reliance on them for routine tasks.

Driving is a dangerous and complex activity, and the physical and cognitive degeneration associated with MS will ultimately require changes in the way you drive.  For all of us, we will likely need to give up the keys. Studies show that individuals with MS are 3 times more likely to have a car crash, putting themselves and others in danger. A car crash can exacerbate MS symptoms and adversely affect its progression. The risks you take behind the wheel can also negatively affect your relationships, and directly impact family and friends who worry about your well-being, and who also will live with the aftermath of a car accident you might have.

 Just because you have MS doesn’t mean you have to stop driving.  You must fight stereotypes that come from others, and also from yourself, about life with the disease.  But independence means keeping yourself safe and, as the National MS Society points out, recognizing when it is no longer in your self interest to perform certain activities, including those around driving.

 How does one recognize when it is time to modify driving habits?

 The first step is to be self-aware and honest. We all have instincts and an inner voice; we don’t always pay attention to what we are telling ourselves, however. If you think you feel uncomfortable or lack confidence behind the wheel, you probably do. Your body and mind are signaling that something is off, and you honor yourself by heeding those signals.         

Our thoughts, even fleeting ones, can be red flags: I only feel comfortable driving during the day. Those dings in my car, they’re a normal part of driving, right? I feel too tired to drive but I’m doing it anyway because I have to get to work. I feel uncomfortable driving my grandchildren. I feel uneasy but I won’t discuss it with my family or doctor because they’ll take my keys away, or make me feel like a sick person.

Our physical selves behind the wheel tell a more obvious story about deficits caused by the disease and their effects on your driving: Are you experiencing muscle weakness, tremors, loss of coordination, slowed reaction time? How is your vision? Do you have blind spots, problems with blurred or peripheral vision? Can you distinguish the colors of a stoplight?  Do you have trouble getting in and out of the car or filling your gas tank? Do you have difficulty moving your foot between the brake and gas pedals?

Cognitive acuity is essential for driving safety. Sometimes medications can cause fatigue or affect mood, concentration, memory or slowed decision making. Sometimes these are the symptoms of MS itself. Take an inventory: Are you having trouble judging distance or rate of speed? Have you forgotten your destination or gotten lost? Does listening to the radio distract you? Are you easily angered on the road?

Having physical and cognitive symptoms of MS does not mean you must give up driving.  Modifications in driving habits or adaptions for your vehicle should be progressive, like the disease itself, and made depending on your abilities and changes over time.

These modifications can be modest at first: Know your daily rhythms and drive only when you feel high energy. Avoid bad weather and high traffic. Don’t drive with another illness, when MS symptoms could worsen. Avoid driving during MS exacerbation.  Communicate your concerns to loved ones.

But starting those discussions can be difficult. It is natural to fear burdening family and friends with your illness.  Perhaps you think they have not noticed trouble you have around driving, and you believe bringing it up will create issues where none exists. But that is merely another form of denial. Your family has noticed! Much as you notice their habits and deficits.

Your loved ones may not be talking about their concerns for a variety of reasons: They may have tried, and you rejected their intervention. They fear causing an argument. They are investigating third-party interventions—reporting you to the Department of Motor Vehicles, or asking your doctor to intercede—to force modifications or to get you to stop driving altogether.

If you begin the dialog, you exercise some control over your illness and how you want to live with it. That is another expression of independence.

Changes that come from these discussions can keep you on the road longer. Your physician can be a tremendous aid in this goal. He or she is knowledgeable about the course of the disease and is sympathetic to your challenges (if not, find a new physician). If medications cause symptoms that interfere with the safe operation of the car, perhaps they can be eliminated or dosages adjusted.  Physicians are an objective voice of authority. They can order tests, such as an eye exam, that provide precise information on your abilities, and share that with loved ones who may be reassured by the results. They can direct you to driver rehabilitation specialists who can perform evaluations and suggest risk modifications and adaptive equipment for your car.

Driving is the most important activity that many of us fear will go away. Losing one’s ability to drive, no matter the cause, often results in feelings of grief. It is a real and symbolic loss of freedom, health, identity and self-worth.  It can compound feelings of depression and anxiety that many with MS are already at higher risk for.

How to live without your car?  Each of us will have an individual response to that question, but there are strategies to soften the blow: Don’t be afraid to ask others for assistance and, when someone offers to help, find ways that they can. Understand public transportation options; identify reliable cab companies; and create Uber, Lyft or other car service accounts. Create carpools. Check with church, community groups and social service agencies that typically generate lists of volunteer drivers. On the institutional level, contact your state Office of Disability Services, the National Aging and Disability Transportation Center, and the National MS Society for transportation programs and providers.

Life does not end without driving! It does, however, change. How will you define your new normal? Your new independence? Your freedom?

Buddhist monk and philosopher Thich Nhat Hanh says to stay open to the possibilities: “Letting go gives us freedom, and freedom is the only condition for happiness.”