News & Events
How to Navigate Work and Life with Chronic Autoimmune Disease
By Kimberly Dorris
Last week, the GDATF and Immunovant hosted a presentation with Michelle Irving, Founder of Career and Chronic. Navigating Your Path: Living and Working with Chronic Autoimmune Disease – which you can now view on our YouTube Channel – offers our community members a unique road map for managing your career while living with a chronic illness. I wish I’d had this framework back in 2007 when I was first diagnosed with Graves’ disease! The resources referenced in the program can be downloaded here:
Michelle Irving’s Career and Chronic Illness Map
We hope you will find this program valuable no matter what profession you work in or what country you live in. But when it comes to navigating a career and chronic illness, those of us who live in the USA have some unique opportunities – and also some unique challenges.
The Family & Medical Leave Act (FMLA)
Do you need a temporary off ramp after a new diagnosis or a new flare? If you work for a company that employs 50 or more people within 75 miles, you might be eligible to take up to 12 unpaid weeks of leave under FMLA (and keep your group health insurance). In order to qualify, you must be diagnosed with a serious medical condition and have worked for your employer for at least 12 months (with a total of at least 1,250 hours worked within the last year).
Americans with Disabilities Act (ADA)
The ADA is a federal law that prohibits discrimination against people with disabilities in everyday activities – including in the workplace. The ADA defines a person with a disability as someone who:
- has a physical or mental impairment that substantially limits one or more major life activities,
- has a history or record of such an impairment (such as cancer that is in remission), or
- is perceived by others as having such an impairment (such as a person who has scars from a severe burn).
Title I of the ADA applies to employers with 15 or more employees and requires that these companies provide “reasonable accommodations” to qualified people with disabilities, unless the requested accommodation would create an “undue hardship”.
Learn more about the ADA here and read on for more information about potential job accommodations.
The Job Accommodation Network (JAN)
JAN is a service of the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP). It was developed in collaboration between ODEP, West Virginia University, and private industry throughout North America. JAN offers an A-Z list of conditions (including Graves’ disease and thyroid disorders) along with potential job accommodations. For example, these accommodations might include job restructuring, a flexible schedule, periodic rest breaks, fans or space heaters, written instructions, cubicle doors, or anti-fatigue matting.
Health Insurance
One of the challenges with making a career change in the USA is that health insurance is often tied to employment. If you are off ramping – and you work for a company that employes 20 people or more – ask your employer about COBRA (an acronym for the Consolidated Omnibus Budget Reconciliation Act), which can allow you to keep your employer-based insurance for up to 18 months after separation by paying the full cost of the premium plus a small administrative fee.
State/Federal Marketplace Options
If COBRA premiums are too pricey, you can also check insurance options on the federal marketplace or your state’s own marketplace. Typically, new enrollment is only offered for a few weeks at the end of the calendar year, but if you experience a “qualifying life event” – which includes loss of employer-based health coverage – you can enroll outside the usual time frame.
To learn more about marketplace coverage, including whether your state has its own plan, click here!
Alternatives to Health Insurance: Buyer Beware
Alternatives to traditional health insurance – like short-term plans or “ministry sharing” plans – can be attractive due to lower premiums, but these plans often lack key consumer protections. For example, you can be rejected outright for having a pre-existing condition (or care for your pre-existing condition can be specifically excluded from the plan’s coverage). And if you have a catastrophic injury or medical emergency, these plans can leave you stranded without care or buried under a mountain of medical bills – so be sure to read all the fine print, including whether the plan has annual or lifetime caps.
Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI)
If your condition is so serious that you are unable to work at all, SSDI and SSI can potentially provide benefits. Eligibility for SSDI is based on your age, disability, and your work history. SSI eligibility is based on age and disability status. The application process can be challenging – and many patients get rejected after the first application – so it’s important to have an experienced attorney on your team if you are interested in pursuing these options.
Learn more about SSDI and SSI here.
Let Us Know What You Think!
Did this program resonate with you? Have you successfully used one of the options noted above? Do you have a trusted tip that has helped you balance your career and your medical needs? Let us know! Fill out the Contact Form on our website and select “I Have a Suggestion / I’d Like to Provide Feedback”. We might feature your response in a future blog post!