Work can be stressful and tough without a disease like MS. What’s a person to do when confronting a challenging career and a challenging disease? Plenty of people (and celebrities) have flourished in their careers in spite of MS. What can you do to be one of those people? What are your options if you simply can’t work anymore? What do you need to know about Multiple Sclerosis and disability?
Last week I began a new position at the company where I’ve worked for over a decade. The coming months are certain to be incredibly stressful. The primary challenges I face on a daily basis in a technical office career are cognitive issues, speech issues, walking (even though it’s primarily short distances), and fatigue. I abstain from many medications because they cause too much lethargy for me to power through a work day while taking them. While these are not all of the challenges I face with Multiple Sclerosis, they are the symptoms that affect me most in my job.
Many times when I meet someone, they are surprised that I do still work. I often think about how I could spend the time I’m stressed and tired at work instead resting, doing yoga, swimming, anything to help myself physically and mentally. Then again, who doesn’t dream about being somewhere else when they’re busy on the job? Certainly doctors and hospitals seem to expect everyone to have open schedules ready to spend hours and days in their offices.
Everyone knows that stress can magnify daily MS symptoms, and a job is an excellent source of stress. Supposing you can get past the challenges of a physically demanding job, what are some challenges in a career that are normally overlooked?
- Evolving industries that require workers to keep up with new technology.
- Problems remembering policies and procedures
- Adversarial coworkers
- Fatigue during the day
- Fatigue during the evenings that may make it difficult to study or work from home
- Exhaustion following business dinners (which usually also entail business drinks)
Statically speaking (although I myself doubt the full accuracy), only 30% of those of us diagnosed with Multiple Sclerosis work. The larger portion of MS patients are women, and perhaps some of those who do not work are stay at home moms or housewives and do not work by choice. Some, surely, are disabled.
Many of us hope to work until retirement and are faced with another daunting statistic – after diagnosis we tend to learn 50% more slowly than before diagnosis. I have noticed a marked change in my own ability to learn and process information.
In 1964 the Civil Rights Act paved the way for the 1990 Americans With Disabilities Act which was amended again in 2009. As you continue to work, you should be aware that if you are qualified for a job or promotion it is illegal for anyone to discriminate against you based on your diagnosis or disability. Furthermore, your employer is required to make reasonable accommodations for you. Get informed and take a look at the ADA website. If you have Multiple Sclerosis and continue to work, look around and try to find ways to make your life easier (and more successful). Perhaps you would function better if the office were a degree or two cooler. Or perhaps you would be less fatigued during the day if you were closer to the bathroom or break room. Would a slight schedule change help you manage fatigue or certain symptoms? Maybe a fan would help you. Maybe a different chair. Find ways to make your life at work better than it is. Try to find ways to stay organized and reduce stress. Each person reading this will have a unique scenario – brainstorm and try to find ways to tweak your work environment to improve your life.
Although we may all hope to never be faced with it, many of us may have to deal with short and longterm disability. For short term disability, you may have insurance coverage already (although any disability insurance is virtually impossible to obtain post-diagnosis), or you may need to use FMLA (Family Medical Leave Act). Familiarize yourself with this as well as you may be able to use it when an exacerbation strikes.
Permanent disability is certainly trickier. If you have accumulated enough Social Security credits and have worked 5 of the last 10 years, you may be eligible for SSDI (Social Security Disability Insurance) Typically you will need at least 40 credits, with at least 20 of those credits earned within the last 10 years. You will be automatically enrolled in Medicare after being covered by SSDI for 2 years. If you are disabled and your family has less than $3000 in assets, you may be eligible for SSI (Supplemental Security Income). Upon retirement, SSDI is converted to retirement income. SSI differs and retirement benefits will be calculated based on your specific situation.
SSDI and SSI can be very difficult to obtain – many individuals are repeatedly turned down and have to enlist the help of lawyers. If you have become disabled, read the disability portion of the SSA website and prepare yourself.
How does one qualify as disabled? Per the SSA website, you are disabled if:
- You cannot do work that you did before;
- We decide that you cannot adjust to other work because of your medical condition(s); and
- Your disability has lasted or is expected to last for at least one year or to result in death.
When determining disabling conditions, the government has the following to say specifically about Multiple Sclerosis:
E. Multiple sclerosis. The major criteria for evaluating impairment caused by multiple sclerosis are discussed in Listing 11.09. Paragraph A provides criteria for evaluating disorganization of motor function and gives reference to 11.04B (11.04B then refers to 11.00C). Paragraph B provides references to other listings for evaluating visual or mental impairments caused by multiple sclerosis. Paragraph C provides criteria for evaluating the impairment of individuals who do not have muscle weakness or other significant disorganization of motor function at rest, but who do develop muscle weakness on activity as a result of fatigue.
Use of the criteria in 11.09C is dependent upon (1) documenting a diagnosis of multiple sclerosis, (2) obtaining a description of fatigue considered to be characteristic of multiple sclerosis, and (3) obtaining evidence that the system has actually become fatigued. The evaluation of the magnitude of the impairment must consider the degree of exercise and the severity of the resulting muscle weakness.
The criteria in 11.09C deal with motor abnormalities which occur on activity. If the disorganization of motor function is present at rest, paragraph A must be used, taking into account any further increase in muscle weakness resulting from activity.
Sensory abnormalities may occur, particularly involving central visual acuity. The decrease in visual acuity may occur after brief attempts at activity involving near vision, such as reading. This decrease in visual acuity may not persist when the specific activity is terminated, as with rest, but is predictably reproduced with resumption of the activity. The impairment of central visual acuity in these cases should be evaluated under the criteria in Listing 2.02, taking into account the fact that the decrease in visual acuity will wax and wane.
Clarification of the evidence regarding central nervous system dysfunction responsible for the symptoms may require supporting technical evidence of functional impairment such as evoked response tests during exercise.
11.09 Multiple sclerosis. With:
A. Disorganization of motor function as described in 11.04B; or
B. Visual or mental impairment as described under the criteria in 2.02, 2.03, 2.04, or 12.02; or
C. Significant, reproducible fatigue of motor function with substantial muscle weakness on repetitive activity, demonstrated on physical examination, resulting from neurological dysfunction in areas of the central nervous system known to be pathologically involved by the multiple sclerosis process.
11.04 Central nervous system vascular accident. With one of the following more than 3 months post-vascular accident:
B. Significant and persistent disorganization of motor function in two extremities, resulting in sustained disturbance of gross and dexterous movements, or gait and station (see 11.00C).
C. Persistent disorganization of motor function in the form of paresis or paralysis, tremor or other involuntary movements, ataxia and sensory disturbances (any or all of which may be due to cerebral, cerebellar, brain stem, spinal cord, or peripheral nerve dysfunction) which occur singly or in various combinations, frequently provides the sole or partial basis for decision in cases of neurological impairment. The assessment of impairment depends on the degree of interference with locomotion and/or interference with the use of fingers, hands and arms.
Reading this, it’s hard to imagine anyone I’ve known with MS that would not qualify. However, one phrase I hear time and again about MS is “If you don’t use it you lose it.” Only you can decide what’s right for your life.
How does MS affect you at work? How has SSI or SSDI affected your life? Was obtaining disability coverage easy or difficult?