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.
Concentration Problems:
- 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
Light Sensitivity:
- 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
Migraine Headaches:
- 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
Sleep Disorder:
- Allow flexible work hours & frequent breaks
- Allow work from home
Fatigue/Weakness:
- 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
Temperature Sensitivity:
- 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.
For more information about applying for SSI, go to the Supplemental Security Income Home Page. The Benefits Eligibility Screening Tool will also help you determine if you are eligible for SSI.
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.
Disability Planner: How You Apply For Disability Benefits
Applying for Social Security Disability (A step-by-step overview of the process)
Disability and Chronic Fatigue Syndrome
Applying for Disability? The Guidelines for CFS Have Changed
Getting Disability Benefits for Chronic Fatigue Syndrome (CFS)
How severe must your condition be to be awarded Social Security Disability or SSI?
The Complete Guide to Social Security Disability Benefits
Function Report Adult Third Party Form – It can be useful to get people who are not doctors to write reports about how an illness or disability has affected somebody when applying for disability payments.
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:
VIDEO: Winning Isn’t Easy: Eight Common Reasons Why ME/CFS Long-Term Disability Claims Get Denied
VIDEO: Top 5 Reasons for Long-Term Disability Insurance Denials
ME/CFS ERISA and Individual Disability Income Long Term Disability Insurance Claims
MORE RESOURCES
How to Get On provides a self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on ME/CFS. Site includes multiple resources: How to Have a Great, Disabled Life, Applying for Disability, Living on Disability, Applying for Home Aides, Having Home Aides, Applying for Housing, Living in Housing Disability Accommodations, Financial Survival, SSI Rules & Regs, Homebound/Bedbound ME/CFS
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 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.”
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.
Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases A useful guide for doctors to use when evaluating pediatric and adult disability due to ME/CFS.
David vs. Goliath: How Disability Insurance Companies Unfairly Contest Long Term Disability Claims, Particularly ME-CFS Claims, and What To Do About It This is a very good article about all the ways companies can sabotage your disability application, and how to get around their strategies.
NOLO: Social Security Disability & Chronic Fatigue Syndrome (CFS, CFIDS) Social Security uses the CDC’s definition of chronic fatigue syndrome to evaluate CFS/CFIDS for disability. (Basic information)
Pensions – obtaining an ill-health pension, prognosis & permanency in ME/CFS This leaflet is geared to the UK, but it contains useful information for anyone applying for disability.
Documenting disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) This article summarizes the range of methods used in successful US disability claims, which include documentation of the functional impact of post-exertional malaise and the use of methods that provide objective evidence of impairment.
Job Accommodation Network: Accommodation and Compliance: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome This Job Accommodation Network webpage outlines a list of workplace (and education) accommodation ideas for ME/CFS patients in this article, broken down by symptom category.
The Nuts & Bolts of Applying for Disability Benefits in the U.S with ME/CFS or Long COVID This webinar is presented by OMF’s Founder & CEO, Linda Tannenbaum, Social Security Attorney Barbara Comerford, and Neuropsychologist Gudrun Lange, PhD. A PDF transcription of the webinar is HERE.