What You Need to Know About Chronic Illness and Employment

Right or wrong, we’re strongly connected to the work that we do. We allow it to define us, and that’s a mistake. I’ll set the stage: you’re at a party or some type of get-together and you’ve just been introduced to someone.

You’re standing there gripping your Coke (okay, a vodka tonic) for moral support as you try to ease into a conversation. And there it is – someone (maybe you!) asks the question: “What kind of work do you do?”

Gah! It’s an awful question, really. And while I don’t hear it as much as I used to, it’s still out there, making people squirm a little as they try to remember the “elevator pitch” that concisely portrays their job in a manner that is both pleasant and interesting.

I read an article some time ago discussing how people in many other parts of the world find this question to be rude or offensive when posed without pretext or too soon in a conversation with someone you otherwise know little or nothing about.

And I get it. Maybe we don’t want to talk about our job because it’s not the most important part of our lives. Or maybe we don’t want to talk about it because we’re afraid of being judged in some way. It could be that we’re between jobs and we’d rather not explain that. And maybe our job is raising a family but we don’t think that’s what someone means when they ask the question.

I’m pretty sure I’ve responded foolishly in the past to this question when I was on maternity leave for several months. I probably said something like, “My job? Well, right now I’m on maternity leave but I work for….”, As though raising a family isn’t a job.

Chronic illness and employment can seem like mutually exclusive things

If you’re living with a life-altering illness you know what I mean. Most of us need to work, and even if we don’t need to financially, we want to work. Emotionally, it’s damn hard to admit it when we can’t do the work we used to do. We may lose our job, have difficulty finding a new one, or have to come to terms with accepting a different type of job.

I’ve been down this path a couple of times now. My cancer treatment ended in 2006. I had been doing consulting work when I was diagnosed, so I didn’t have a traditional job to go back to. Even if I had, I wasn’t ready – emotionally.

I recovered relatively quickly physically (all things considered), but mentally I was in a dark place. For quite a while. The relapse rate (meaning that the cancer will return) is pretty high for the first couple of years. The risk begins to decline after two years, and after five years the chances of relapse are relatively low. But a survivor can also get a secondary cancer, a result, in part of the toxicity of the treatment that cured the original one. Yay science! Because chemotherapy is the gift that keeps on giving.

Chronic illness and employment: fear of moving forward

I was afraid to make plans. It was difficult to take the concept of a job seriously. I was in a state of perpetual distraction, hypervigilant about every sensation in my body. Was the cancer back? And my mind was firmly fixated on more important things – like what if I won’t be around to raise my children?

I felt similar when I was diagnosed with myositis. The biggest difference was that this time I had real physical limitations. It was hard to breathe. It was hard to walk. I couldn’t hold my head up easily. There are no words to describe the fatigue. It took so much energy to shower that it became a once-a-week event. And I dreaded it.

Chronic illness and employment – it goes to together about as well as pineapple and pizza, right? (Sorry if I offended you.)

As a repeat recipient of the “You Have a Life Changing Disease!” award, I’ve learned a lot about illness and how it impacts our emotional health, our sense of sense, our relationships and our perceptions about our jobs.

Here’s what you need to know about chronic illness and employment:

1. You always have a choice

It’s natural to become attached to what we do – or to our perceptions about what it “means”. So much so that it can be hard to be honest with ourselves when the work we’re doing isn’t working for us anymore.

We can make an informed, conscious choice or a choice will be made for us. But in order to make an informed decision we have to be honest with ourselves about limitations we may have.

We have to accept them – whether temporary or permanent, and we need strike some balance between the financial, practical need to work and the physical or emotional bandwidth we have. Even if we can physically perform a job, the stress may have disastrous impacts.

Be honest with yourself about what you want to do and what you can do

When I was ready to return to the world of the employed after my cancer treatment, I looked for a part-time job. I admitted to myself that I wasn’t emotionally ready to step back into a full-time job in corporate environment.

Mentally fragile. Terrified of a relapse. That’s how I felt. And I didn’t want to accept a full-time job and feel like a liability. So I accepted a part-time job with a small firm.

It was the right thing to do but it changed my career trajectory. I initially felt that I had “settled” for less and I struggled with it. I ended up becoming full-time after a couple of years, but I still saw my choice as a setback, a far cry from the prestige and the trappings of my before-cancer career.

That was the wrong way to look at it. The pay was fair for the nature of the work, I had a great deal of flexibility, rarely had to travel and never had to work more than a typical 40-hour week. My kids were young and I was able to balance my job and personal life.

My heart knew that I made the right choice – even when my head didn’t agree. When we operate from a place of honesty, we won’t fail.

2. Be honest with your employer

If you are employed, it’s best to be honest with your employer about any limitations you have that impact your ability to perform your job. While it’s not always easy to initiate the conversation, it’s best to be up front for several reasons:

If your employer isn’t aware of your disability, they can’t be required to provide any accommodation for it.

Once you have the discussion, your employer can help to ensure that you understand policies, processes and resources available to you in your workplace.

You can work together to determine what accommodations can be made. For example, adjusting your schedule or your workload, determining if certain tasks can be managed differently, and ensuring that you have reasonable physical accommodations, if needed (accessibility, technology, etc.)

When your employer knows why you may have difficulty performing certain tasks, or why you may be taking more time off than usual, he or she won’t draw the conclusion that there are performance issues that need to be addressed.

This is not construed to be legal advice. It’s a complicated topic, as there are distinctions regarding what accommodations are reasonable, and the degree to which providing an accommodation may pose a hardship to the employer. Which brings me to…

3. You have rights – and it’s important to know them

There are workplace laws prohibiting discrimination and requiring reasonable accommodations. In addition, the Family Medical Leave Act provides job-related leave to eligible employees. Your human resources department should be able to discuss workplace protections with you.

If you feel that you need more information (never a bad thing!) There are many online resources available to explore. It’s also helpful to understand that there are federal and state laws, so you’ll want to explore specific employment laws for your state, too.

If you are not currently employed and are in the process of searching for a job, you will want to give careful consideration as to when, or how much you should disclose about your condition (if there are no apparent indications of a disability).

Generally, the first interview is exploratory and therefore typically not the appropriate time for the discussion. You’ll first want to learn enough about the organization to determine if you’re even interested, and will need to assess how much, if any, accommodation you would need to perform the job. This is a topic for another post, but you’ll find some good guidance here.

4.There are job opportunities for you

Read that again. There really are.

According to the CDC, six out of ten adults are living with chronic illness. While many may have conditions that do not (at least at the moment) impact their ability to work, we’re not alone.

Clearly there are people at all points across the spectrum, from those whose ability to work effectively in a job of their choosing isn’t impacted by their illness, to those who are fully disabled – and everywhere in between.

But truly, there’s some good news here! There’s so much more awareness about chronic illness and employment than there used to be.

We’ve seen a dramatic increase in the ability to work remotely over the past twenty years – with a massive boost earlier this year, courtesy of COVID-19. And while there are many jobs where working remotely isn’t possible, it’s expected that post-pandemic (whenever that is!) working from home – at least to some degree – will remain a new norm.

This is good news for those of us with physical limitations, which often include the fatigue that accompanies chronic illness. Those of us with autoimmune issues also need to protect our immune systems.

The need for social distance is driving significant and lasting changes in the workplace and in how jobs can be done. Ahhh…. necessity! The mother of invention.

Efforts in the diversity and inclusion space also translate to more awareness of the need to ensure that people with physical, sensory, emotional or other impairments are truly included in initiatives to increase diversity in the workplace.

A Resource for the Chronically Ill

I recently read an inspiring story about Hannah Olson, a young woman and recent college graduate battling Lyme disease. Hannah soon discovered what some of us already know about chronic illness and employment: it’s not easy to manage both.

What’d she do? She founded Chronically Capable, a platform to connect chronically ill job seekers with employment opportunities. The organization wants to eliminate the employment gap that exists between Americans who are chronically ill and those who are not.

The hidden gift

Believe me, there is one. Most of us hate change – even a change designed to make things better is still change. Sometimes we know we need to change something but we fight it because it’s not a change we want. This is true whether we’re struggling with how to manage chronic illness and employment or any other challenge we face because we’re ill.

How you define your new normal in all facets of your life as a chronically ill person is up to you.

That full-time job I had? I don’t work full-time anymore. I work a manageable schedule that gives me flexibility. I’ve been honest with my employer about my health issues. I enjoy my work but I don’t live it, because it does not define who I am or what I’m worth.

Are you fighting making a change that honors your health and your heart? I’ve got news for you. Don’t fight making that change. It will find you. It will impose itself upon you unless you strip away the noise and get out of your own head. Will it be easy? Probably not. Will it be worth it? Most likely, yes. And will it be the only change you’ll ever have to make? Hell, no. But that’s where the beauty lies – in opportunities to grow and to live forward.