Myasthenia gravis often starts between ages 20 and 40, just when your career is taking off. Symptoms like weakness, double vision, and fatigue could make it hard to work a 40-hour-a-week job. These and other symptoms might force you to take unpaid time off, change jobs, or retire sooner than you planned. Leaving work is hard to do when you need the income and health benefits.
Myasthenia gravis doesn't have to put an end to the career you've worked so hard to build. Medication and other treatments can often get your symptoms under enough control for you to lead a normal life.
Depending on your type of job and how severe your symptoms are, you may need to make some changes at work. To get these accommodations, you'll need to tell your boss about your condition. How you make the reveal and what job changes you ask for depend on your situation.
To Tell, or Not to Tell?
Myasthenia gravis symptoms aren't always visible. Your boss and co-workers may not know you have a medical condition until you say something.
The decision to open up about your diagnosis is personal. Under the law, you don't have to tell your employer about myasthenia gravis. In fact, it's illegal for any company to ask about your condition during the interview process or to not hire you for a job because of it.
But if symptoms like weakness and slurred speech affect your work, you may want to explain the reason so your boss doesn't think you're slacking. Once you reveal your condition, you can ask for accommodations that make it easier to do your job.
When you tell your boss about myasthenia gravis is also up to you. You have the option to disclose your condition when you're first hired, or later. You can also decide whether to share just the basics about myasthenia gravis or go into the details.
Your Rights at Work
If myasthenia gravis affects your ability to work, you may qualify for job accommodations under the Americans with Disabilities Act (ADA). The ADA ensures that everyone has the same opportunities at work. It allows people with disabilities like myasthenia gravis to get the accommodations they need to do their jobs.
Keep in mind that the ADA only applies to companies that have more than 15 employees. If you work for a smaller company, you can ask for accommodations, but you may not get them.
Myasthenia gravis is also covered under the Family and Medical Leave Act (FMLA). The FMLA allows you to take up to 12 weeks off each year for medical reasons. You can take those 12 weeks in a single block or spread them out over the year as you need them.
Tips for Having 'the Talk'
Odds are that the people you work with have never heard of myasthenia gravis. Before you tell your company, you may want to ask your doctor how to explain your condition and its effects on your life.
Then set up a meeting with your employer. You might describe myasthenia as a disease that causes muscle weakness. Go over your symptoms and how they affect your job.
Tell your boss how the disease can change over time. Your symptoms will get more intense when your disease is active and improve when you're in remission. That will help your employer understand why your needs could change in the future.
You might also want to explain myasthenia gravis to your co-workers. Then if your eyelid droops or you have trouble talking, they'll know why.
How to Ask for Accommodations
Every person's experience with myasthenia gravis is different. Some people have double vision and can't look at a computer screen. Others are too tired to work a full day. Which accommodations you ask for will depend on your symptoms:
Double vision. Get help with tasks that require you to read or look at a computer screen.
Fatigue. Work from home. Take more days off. Change to a desk job. Get a parking space near the building. Or take rest breaks during the day.
Slurred speech. Type up or record what you plan to say during a meeting or presentation.
Trouble swallowing. Take longer lunch breaks.
Weakness. Get help with lifting or other strenuous activities. Use assistive devices like an ergonomic keyboard or grip handles. Type using voice-to-text software.
Explain how these accommodations will not only help you, but also benefit your company because you'll be able to do your job better. Be ready to answer any questions your boss might have, like how you'll get work done when you're out of the office. If your employer seems unsure, offer to do a trial run of the accommodations so they can see how you'll adapt.
Do You Qualify for Social Security Disability (SSD)?
You may qualify for social security disability (SSD) benefits if you can't work because of myasthenia gravis. First, you'll need to meet certain requirements. For example, if you've been on a treatment like medication for at least 3 months but you still have problems with:
- Balance
- Breathing
- Swallowing
- Talking
- Memory
- Muscle weakness
You'll need to apply for disability through the Social Security Administration (SSA). The SSA will want to see your medical records.
In your application, you'll have to describe how myasthenia gravis symptoms affect your life and limit your ability to work. Your doctor can help you fill out the application. Hiring a disability attorney to work on your case might increase your chance of being approved.
Show Sources
Photo Credit: shironosov/Getty Images
SOURCES:
ADA.gov: "Introduction to the Americans with Disabilities Act."
Disability Benefits Center: "Applying for SSD with Myasthenia Gravis."
Health and Quality of Life Outcomes: "Quality of Life and Life Circumstances in German Myasthenia Gravis Patients."
Job Accommodation Network: "About Myasthenia Gravis."
Myasthenia Gravis Association of Western Pennsylvania: "MG in the Workplace."
Myasthenia Gravis Foundation of America: "Requesting Accommodations for Myasthenia Gravis at Work," "Talking About MG."
National Institute of Neurological Disorders and Stroke: "Myasthenia Gravis."
Neuro-Epidemiology: "Employment in Myasthenia Gravis: A Systematic Literature Review and Meta-Analysis."
National Health Service (U.K.): "Myasthenia Gravis."
Social Security Administration: "Disability Evaluation Under Social Security."
U.S. Department of Labor: "Americans with Disabilities Act," "Family and Medical Leave Act."
