Chronic Fatigue Syndrome & Myalgic Encephalomyelitis - Work & Disability
Many people with mild cases of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis (ME/CFS) are able to continue working either full or part time. Others find that the fatigue and cognitive problems are so severe, continuing to work is impossible. When that happens, it may be necessary to apply for disability.
Whether you're struggling to continue working or trying to navigate the disability maze, the following sections will offer guidance and tips to help you along your journey.
Working with ME/CFS
While working when you have ME/CFS is not easy, it does offer some important benefits if you're able to do it. In addition to the obvious financial benefits, working can contribute to feelings of self-worth, provide opportunities for social interaction, offer intellectual challenges and even help distract your mind from your illness for periods of time as you focus on your job tasks.
In most cases, there are modifications that can be made to your job, schedule or workspace that can improve your ability to continue working and increase your productivity. According to the Americans with Disabilities Act (ADA), most employers are obligated to make "reasonable accommodations" for people with disabilities.
The following list of possible modifications for people with ME/CFS is provided by the U.S. Department of Labor's Job Accommodation Network. You can use this list when discussing suggested modifications with your employer.
For answers to the most frequently asked questions about your rights under the ADA, read: Working with Fibromyalgia or ME/CFS - Your Rights Under the ADA
- Provide written job instructions when possible
- Prioritize job assignments & provide more structure
- Allow flexible work hours & allow a self-pace workload
- Allow periodic rest periods to reorient
- Provide memory aids, such as schedulers or organizers
- Minimize distractions
- Reduce job stress
- Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm
- Avoid reflective surfaces such as sand, snow, and concrete
- Provide clothing to block UV rays
- Provide "waterproof" sun-protective agents such as sunblocks or sunscreens
- Install low wattage overhead lights
- Provide task lighting
- Replace fluorescent lighting with full spectrum or natural lighting
- Eliminate blinking and flickering lights
- Install adjustable window blinds and light filters
- Provide task lighting
- Eliminate fluorescent lighting
- Use computer monitor glare guards
- Reduce noise with sound absorbent baffles/partitions, environmental sound machines, & headsets
- Provide alternate work space to reduce visual & auditory distractions
- Implement a "fragrance-free" workplace policy
- Provide air purification devices
- Allow flexible work hours & work from home
- Allow periodic rest breaks
- Allow flexible work hours & frequent breaks
- Allow work from home
Depression & Anxiety:
- Reduce or eliminate physical exertion & workplace stress
- Schedule periodic rest breaks away from the workstation
- Allow a flexible work schedule & flexible use of leave time
- Allow work from home
- Implement ergonomic workstation design
- Provide a scooter or other mobility aid if walking cannot be reduced
- Reduce distractions in work environment
- Provide to-do lists & written instructions
- Remind employee of important deadlines & meetings
- Allow time off for counseling
- Provide clear expectations of responsibilities & consequences
- Provide sensitivity training to co-workers
- Allow breaks to use stress management techniques
- Develop strategies to deal with work problems before they arise
- Allow telephone calls during work hours to doctors & others for support
- Provide information on counseling & employee assistance programs
- Modify work-site temperature & maintain the ventilation system
- Modify dress code
- Use fan/air-conditioner or heater at the workstation & redirect vents
- Allow flexible scheduling & work from home during extremely hot or cold weather
- Provide an office with separate temperature control
Social Security Disability Insurance
If you are no longer able to continue working, you may qualify for Social Security Disability benefits. Going through the process of applying for SSD is generally not a simple task.
Therefore, it's important to learn all you can about the process before you begin in order to maximize your chances of being approved.
The following information and especially the suggested articles can help you navigate the system as smoothly as possible.
There are two types of disability benefits available through the Social Security Administration (SSA):
If you're unsure which program best fits your situation, use the Benefits Eligibility Screening Tool to see which you may be eligible for. The information here applies only to SSDI. For more information about applying for SSI, see: Supplemental Security Income Home Page
- Social Security Disability Insurance (SSDI) - Pays benefits if you have worked long enough and have paid Social Security taxes within the past five years.
- Supplemental Security Income (SSI) - Pays benefits based on your financial need.
In determining whether or not you are disabled, SSA asks five questions:
For answers to frequently asked questions about how the SSA determines the answers to questions four and five, see: Work and Education Information the SSA Needs
- Are you working? If you are working and earning an average of more than $980 a month, they do not consider you disabled.
- Is your condition "severe"? Your condition must interfere with basic work-related activities.
- Is your condition found in the list of disabling conditions? The SSA has a list of conditions they consider so severe, they automatically mean you are disabled. If your condition is not on the list, they have to decide if it is equal in severity to another condition on the list. To check the SSA list of disabling conditions, see: Listing of Impairments. If your condition is not on the list or equal in severity, they then move to question 4.
- Can you do the work you did previously? If the SSA determines that your condition does not interfere with the work you previously did, your claim will be denied. If it does interfere, they then proceed to question 5.
- Can you do any other type of work? It's not enough just to be unable to do your previous job. They also look at your medical conditions, age, education, past work experience and transferable skills to determine if you could adjust to doing other types of jobs.
These articles will provide you with additional in-depth information about applying for SSDI, particularly in relation to fibromyalgia:
Applying for Social Security Disability (A step-by-step overview of the process)
Guidelines for evaluation of ME/CFS Disability Claims by Social Security under SSR 99-2p
Applying for Disability? The Guidelines for CFS Have Changed
How to Help Your Doctor Understand ME/CFS Disability
Long-Term Disability Insurance
If you have long-term disability insurance through your employer, you may be able to receive benefits - at least for a period of time - when you are no longer able to work due to fibromyalgia. Be aware, though, that you will likely meet with resistance from your insurance company.
According to disability attorney, Aaron Hotfelder, on the legal network Nolo.com,
Benefits will be terminated after 24 months for those with disabilities which are based primarily on self-reported symptoms, and disabilities due to alcoholism, drug abuse, or mental illness. Self-reported symptoms include manifestations of your condition that are not able to be verified using tests, procedures, or examinations commonly accepted in the practice of medicine, including headaches, pain, fatigue, soreness, numbness, dizziness, ringing in the ears, and loss of energy.
These articles will provide you with additional in-depth information about applying for LDI:
Disability Insurance Q&A - Attorney Team Answers Your Questions
ME/CFS Disability Application Issues: How to Be Your Own Expert Medical Witness
VIDEO: Top 5 Reasons for Long-Term Disability Insurance Denials
The Evolution of Denying Fibromyalgia and Chronic Fatigue Syndrome Claims in Group Long-Term Disability Policies
When You Can't Manage a Full Workload - Partial Disability May Be an Option