Work Barriers for People with Multiple Sclerosis

       I was surprised to find, when I was first reading about Multiple Sclerosis (MS), that the average time from diagnosis to disability was as little as ten years. Now that MRI results are being used to diagnose MS and we can delay it with immune modifying agents this estimate is likely to be longer, hopefully significantly so. Nevertheless, having an estimate is still misleading because of the large variation between individuals. Some people find they can’t work after only a few years. Others work full time until the normal age of retirement.  The course of this disease is very different for each person with MS.  The many reasons for why people with MS (PWMS) can’t work are as varied as the course of the disease.

MS, to review, is a disease in which the body’s own immune system attacks the insulation protecting the nerves that communicate within the brain as well as from the brain to the rest of the body. Most visibly, people with MS may have trouble with balance and strength. The nerves from the brain don’t properly instruct the muscles so that they don’t work efficiently or sometimes don’t work at all. Less visibly, the nerves that communicate from one part of the brain to other parts of the brain can also be effected. This leads to a variety of cognitive problems, ranging from visual loss to difficulty forming and retrieving memories, to problems processing information. Regardless of where the damage lies, the extra neurological effort required to make an injured brain work often produces debilitating fatigue.

The most obvious reasons people with MS stop working are when reduced physical functioning prevents them from performing the movements required for work. If you can’t lift a wrench, you can’t work as a mechanic. If you can’t pull yourself into the cab of a truck, you can’t drive it.  If you can’t stand on your feet for eight hours, you can’t check groceries. If your hands are shaking, you can’t operate a sewing machine. These are simple and direct causes for disability which most people can easily understand.

Although there are frequently obvious reasons like these that cause disability, more PWMS are disabled by more subtle symptoms.  Cognitive difficulties are among the subtel problems.  Cognitive difficulties are problems with thinking.  Examples include difficulties with memory, attention, concentration, processing information, or processing sensory stimulation.  Problems like these can also prevent people from working.

All jobs require a certain degree of attention and concentration, as well as reasonably good memory functioning. You have to be able to process information all day if you are working as a manager, for example. Professionals, like lawyers, accountants, or physicians, depend on their ability to do cognitive tasks throughout the work-day as well.  Even jobs that do not require such extensive training are still cognitively demanding. Truck drivers, nurse aids, crossing guards, even airport luggage checkers have to focus and maintain their attention and concentration and make important judgments in a reasonable amount of time. MS can interfere significantly with these unseen cognitive functions and can make job performance impossible. When cognitive problems prevent the performance of job duties, disability is the result.

There are many people with MS who don’t work because of problems with their thinking. But this, too, does not make up the majority of people with MS who are disabled. The greatest enemy for people with MS who are trying to work is fatigue.

MS fatigue is subtle and very hard to understand for those who haven’t experienced it. It is why some people with MS seem energetic and vibrant at one time, and are dragged out and exhausted at others, sometimes with very little time in between. It is why people with MS spend so much time resting and it is the primary reason why many people with MS can’t work.

Some people with MS who are disabled would be able to do their jobs on Monday morning after a weekend of rest. They might be able to do the exact same things their former coworkers do. They might be able to juggle multiple tasks, balance complicated checkbooks or even balance a fifty or even 100 lb. box. Yet if they persist in doing these things for any length of time, these abilities may disappear.

The cause of this is fatigue. When a brain that is working on a reduced number of connections between neurons (nerve cells) is pressed to work to its maximum, it rapidly runs out of steam. At the cellular level this happens because fewer neurons are responsible for the work that is usually done by a full compliment of neurons and neural networks. It is like having a basketball team of five, with no room for substitutions.  If that team plays a team with ten players, the team with a full rotation of substitutes has a significant advantage in the game. The short-handed team may be able to play with the other team for a while, but over time the fatigue interferes.  If this persists over a whole season, the team is going to fall apart. For someone with MS, this kind of scenario can play out over the course of a week, a day, or even several hours.

Recent research has expanded the understanding of MS fatigue, but so far this has raised more questions than it has provided answers.  The amount of fatigue a PWMS experiences is not easily correlated with what can be seen with an MRI.  Some researchers are exploring how processes unrelated to damage to nerve cells can cause fatigue.  Other researchers are parsing out the qualitative differences between the types of fatigue PWMS experience.  Regardless, in MS fatigue is the most common symptom.

This fatigue is the most common cause of MS work disability. For jobs that require manual labor, the connection is easily seen. It is clear that even if a person with MS can start the day tossing around fifty pound bales of hay like they were beads at Mardi Gras, if by noon they are unable to drag a bail a few feet, they are disabled. This happens in all kinds of manual situations. The walking required in a clerical position can cause the same kind of fatigue. Sometimes wearing out neural connections does more than simply reduce the ability to move or balance.  It can also increase other MS symptoms:  numbness, muscle rigidity, spasms, difficulties with balance and even pain. At times a person with MS can be observed with a widening gait over the course of the day or, after a few hours of work, can be seen lurching from side to side, bumping into walls or even retreating to a wheel chair after a couple of hours of walking and standing.

Fatigue can also influence thinking or cognitive ability.  Many people with MS demonstrate clear and unimpeded thinking when rested. Indeed, until relatively recently it was thought that MS had cognitive effects in only the most severe cases.  People who got MS were told that it only affected strength, balance and sensation. More recently, evidence has demonstrated frequent cognitive difficulties for PWMS.  This becomes more pronounced after a period of physical or mental exertion and can lead to significant difficulty with mental work tasks.

When the disease has progressed sufficiently to make an impact on the connections between crucial links between different areas of the brain, wearing down those links can mean a disruption to the normal ability to make connections, process information, form or recover memories, or even to recognize important information in the environment.  In short, it is hard to think. And if you can’t think, you can’t work. Certainly you can’t work at anything more than very simple tasks, and you are not likely to be able to work at anything someone is going to be paying you for. Take for example, cleaning the house. In a state of fatigue, someone with MS may not be able to process whether the vacuuming or the dusting comes first, or remember whether it was the upstairs or downstairs toilet that was just cleaned.

Such a state of fatigue can be produced by any number of things, from hard physical work — like cleaning the house — or from having to handle multiple sources of sensory stimulation — like being at a loud party with many people, or going shopping at the Mall. In other words, for many people with MS it doesn’t take any unusual cognitive or physical task to produce the kind of fatigue that is sufficiently debilitating to prevent them from adequately performing their job duties.

It is a rare person with MS that has only one symptom. Many times there are multiple problems, including those that are easily apparent and those that are more subtle. For this reason, any one person’s reason for disability may be unique.

But regardless of the particular configuration of symptoms, for people with MS, it is important to recognize the effect of the disease on job performance. It is very easy for someone to miss how MS interferes with work.

This is important to recognize for people early in the course of the disease.  If the inability to do a job is attributed to causes other than the MS, a PWMS can lose his or her claim to the benefits that are available for people who get disabling diseases while on the job. These benefits vary and can include light job duties, flexible hours, protections from discrimination, external assistance, or, in the case of disability,  an important financial buffer while making the necessary adjustments to living with MS.

Equally important, coworkers, friends and families need to recognize that fatigue or cognitive difficulty is not the result of laziness, willfulness, or moral turpitude. It is caused by a very nasty disease. This disease is often disabling. Sometimes the disability is caused by easy-to-see physical restrictions and sometimes the causes of disability are more subtle and insidious.

For each person with MS the course of the disease and many of its specific symptoms will vary significantly. Some people have little cognitive difficulty, but great physical problems. Others have only fatigue as a symptom. Other still have no physical problems or even no problems with fatigue, but may have significant cognitive difficulty.  Each person’s difficulty with MS relates to the number of lesions as well as the specific location of these lesions in our tremendously complex nervous system. Work disability can, unfortunately, be caused by any one of these symptoms.