Chronic Illness Self-Advocacy In The Workplace
Maintaining your employment when you have a chronic illness can be of critical importance to continuing your health insurance, income and other benefits.
It can also be important for your quality of life, by providing fulfillment and connecting you with your deeper purpose.
However, having a chronic illness or disability can present another layer of complication at work that will likely require you to advocate for yourself in order to get what you need to do your job well. This is because we frequently need more flexibility in our schedules or certain specific accommodations in order to continue to work and properly care for our health.
Please note that this post does not provide anything approaching specific legal advice. This is meant to provide you with a general description of potential considerations for empowering yourself at work. Please see my Terms and Conditions if you have further questions.
What this post is intended to do is highlight the fact that YOU hold a unique and pivotal role in advocating for your needs at work.
YOU are the one who is the expert on how your chronic illness or disability impacts your ability to work. YOU are also uniquely poised to know what could be modified at work in order to accommodate your chronic illness to the extent that is possible for you and your employer. YOU are also the person that will initiate the process of asking for what you need from your healthcare provider and your employer in order to live well and work with chronic illness.
While it may be daunting to realize that you have such a significant role to take in advocating for yourself at work, the advantage is that you can help to drive the process of getting what you need. And, because there is no one-size-fits all to how this will look, you can help to shape the outcome to an arrangement that is tailored for your needs.
My Experience
When I first needed to take medical leave due to my second lymphoma diagnosis, I was working for a large employee benefits consulting firm as a legal consultant. As you can imagine, my employer was very supportive and open to accommodating my needs because that was their business - literally.
One part of my job was to draft and review large employer Summary Plan Descriptions - the documents that describe the benefits that your employer is providing you. I knew all about the requirements that employers had when it came to designing their plans.
However, I quickly learned that it is one thing to draft the plan and another thing entirely to navigate the practical side of obtaining the benefits. I had to learn who to call, what to ask for, and how to coordinate administrative details and communication between my doctors and the benefits administrators. In addition, I had to coordinate with my boss and co-workers regarding the actual workload.
Over about 3 years, I utilized my employer’s short-term disability benefits, long-term disability benefits and received several accommodations that allowed me to work part-time from home when I was well enough to do so.
Even with all of this support, I ultimately could not make it work. I walked away from my law career because I was exhausted. I was having trouble keeping up with daily life. I was not healing well from chemo and could not keep up with my daughter who was 3 years old at the time. It was a decision that was very difficult for me personally and for my family’s finances. But, years later, I know that this was the right decision for me.
I want to share some high-level considerations for those of you who are trying to navigate getting what you need from your employer in order to perform your job while living well with chronic illness.
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5 Considerations To Empower Yourself At Work When Living With Chronic Illness
1. How does your work allow flexibility for you and your life with chronic illness?
Many of us with chronic illness require some amount of flexibility in our schedules to allow for healthcare provider appointments, medical treatments and for symptom flares. Due to the pandemic, many employers have embraced a more flexible schedule and/or the option to work remotely. This can be incredibly helpful when you have a chronic illness. But, this is certainly not possible for all jobs.
It is helpful to consider whether you can obtain some reasonable accommodations from your employer so that you can perform your current position well or whether you may need to consider a different position altogether. Some jobs may allow for some adjustments so that you can continue in the same position in a very meaningful way. However, if your job description includes a lack of flexibility and it no longer aligns with your life and symptoms, you may want to find a new position that is a better fit for your chronic illness.
Clearly, this is a big consideration with a lot at stake in terms of financial security and benefits. This is a complicated consideration that will require a lot of thought around what your finances can sustain, how a loss or change in benefits will impact you, and what other options are available to you.
2. What reasonable accommodations are available in your current position?
If you are feeling good about the possibility of being able to maintain your current position with your employer, consider whether there are specific ways to facilitate you being able to do your job well. These might include specific accommodations regarding more flexibility in your schedule or changes to your work environment for specific medical reasons.
In order to receive an accommodation, you will likely need support for this from a physician. Some tips for making this go more smoothly are:
Have a direct conversation with the appropriate people at your job (Human Resources Department or your boss/supervisor, as applicable).
Have some specific ideas for what you would most help you do your job well (i.e., time to go to a regular medical treatment and how to deal with lost work time).
Talk to your doctor about what symptoms you are experiencing and how the specific accommodation(s) might help you.
Track your symptoms and share that with your doctor in the event you need to document why an accommodation is medically necessary.
Please note that you are not required to share all matters regarding your chronic illness or disability. There are certain things you will need to disclose in order to receive an accommodation. But, whatever else you want to share with anyone else at work is purely up to you.
3. What are Your Benefits?
Back in the day, I helped to review and draft employee benefit documents. They are long and boring technical documents, until you need them. Then, you will hang on every word in certain sections. These benefit documents discuss how your employer provides for medical leave, disability benefits, health insurance and other employer-provided benefits. All of these things suddenly become really important when you have a chronic illness diagnosis or disability.
While some benefits are provided by your employer, you may also qualify for state or Federal benefits, depending on the state, your situation, and that of your employer.
It is important to take note of what benefits you might lose if you reduce your employment hours. This can have ramifications for what you are entitled to through your employer and through applicable laws.
4. what are Your Rights?
Familiarizing yourself with the basics of your rights under applicable state and Federal laws and regulations, can help you navigate the workplace. Some good resources for this can include the US Department of Labor Website, the U.S. Equal Employment Opportunity Commission (EEOC) website and your state’s Department of Labor.
As a general matter, certain laws may provide protections to you depending on their applicability to you and your employer related to medical leave, discrimination based on a disability, disability benefits and/or health insurance.
5. When do you need to Consult An Expert?
If it seems that you are being treated outside the bounds of applicable laws, regulations and your employee benefits plans, it might become necessary to consult an attorney with the appropriate speciality so that they can advise you on navigating difficulties.
For More Resources
For more resources related to potential employment opportunities and various discussions of employment matters related to chronic illness and disability, online resources like Chronically Capable can be helpful.
What is your biggest challenge related to living well with chronic illness at work?
What can you do to empower yourself to address it?
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