Many people with milder cases of ME/CFS are able to continue working 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.
Working with ME/CFS
While working when you have ME/CFS is not easy, continuing to work does offer some important benefits. In addition to the obvious financial benefits, working can contribute to feelings of self-worth, provide opportunities for social interaction, reduce isolation, and even help distract your mind from your illness for periods of time as you focus on your job tasks.
In most cases, modifications 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.
- 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
- 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
Depression & Anxiety:
- 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
For answers to the most frequently asked questions about your rights under the ADA, read Accommodation and Compliance Series: Employees with Chronic Fatigue Syndrome (CFS).
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):
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.
If you’re unsure which program best fits your situation, you can use the Benefits Eligibility Screening Tool to see which you may be eligible for. The tool is not an application, it simply helps you determine if you are eligible for benefits.
To determine whether or not you are disabled, the Social Security Administration asks five questions:
- Are you working? If you are working and earning an average of more than $1090 a month, they do not consider you disabled. There are no limits on unearned income, such as interest.
- Is your condition “severe”? Your condition, or a combination of conditions, must interfere with basic work-related activities for twelve continuous months. Or , if you have worked in the past year, you must expect not to be able perform any kind of substantial work activity for twelve continuous months.
- Is your condition included in the list of disabling conditions? The Social Security Administration has a list of conditions that automatically mean you are disabled. To check the SSA list of disabling conditions, go to Listing of Impairments. ME/CFS is not on the list. However, you may have a comorbidity that is.
- Can you do the work you did previously? If the Social Security Administration determines that your condition does not interfere with the work you previously did, your claim will be denied. If it does interfere, they will ask the following question.
- 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.
For answers to frequently asked questions about how the SSA determines the answers to questions four and five, read Work and Education Information the SSA Needs
These articles will provide you with additional in-depth information about applying for SSDI, particularly in relation to ME/CFS.
How to Have “The Talk” – Explains how to talk with your doctor about disability
Applying for Social Security Disability (A step-by-step overview of the process)
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. Be aware, though, that you will likely meet with resistance from your insurance company.
These articles will provide you with more information about applying for LDI:
A Handbook on How to Apply for Social Security Disability Benefits If You Have Chronic Fatigue Syndrome (CFS/CFIDS) – compiled by Kenneth S. Casanova, this is available free from the Massachusetts CFIDS Association website. Cort Johnson endorses it as “the best single resource on disability for chronic fatigue syndrome.”
The Disability Benefits Information Website is an outgrowth of the internet discussion list, Disinissues. It is a gathering point for information and advice about the process of applying for, appealing, and renewing disability insurance from private Long-Term Disability insurers and the U.S. Social Security Administration (SSDI) with a special focus on “invisible illnesses.”
DISINISSUES (Yahoo group). The purpose of Disinissues is to share experience and advice about the processes of obtaining and maintaining Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and long-term disability insurance. The group is targeted towards those with invisible disability due to CFIDS, fibromyalgia, or similar conditions. Benefits professionals are welcome to learn or to help.
Five Crucial Steps to Winning your CFS Disability Case by attorney Scott Davis. This is an older article, but the information is still relevant.
The Sleepy Girl Guide to Social Security Disability (U.S.) by Lily Silver. Silver is a patient, so this article is accessible, succinct, and clear. It specifically addresses disability applications for ME/CFS patients.
“How Patty’s Lawyer Never Told Her What She Needed to Know”
One patient’s mistakes applying for disability payments.