"Choosing a career that makes me happy and works around my life is worth more than a paycheck.” – Nathan Milkins, Workweller
Not Just Surviving, Thriving
Living with a chronic illness is one thing; working while chronically ill is something very different. A diagnosis doesn’t have to mean the end of your work life though. In fact, some people find it beneficial to maintain a sense of ‘normalcy’ through their work. If you’re wondering how to balance the two, you’re not alone. We spoke with Workwellers Nathan, Angela, and Jayne (who face this challenge) and did some research that will hopefully provide some clarity.
Communication AT WORK is Key
You need to decide what you’re comfortable sharing with your employer. It may be scary to reach out to them, but you also might find that telling them is more beneficial than not. It is important to know what you’re asking for when you communicate your situation (do you need to work from home? come in a little later? leave a little earlier? work four days a week versus 5?) By being clear about your needs, your employer will likely be willing to accommodate you. Workweller Nathan shares his experience after his diagnosis with Familial Chylomicronemia Syndrome (FCS). “I was two years into a new job where I was able to work from home with a very flexible schedule. To that end, my employer has been the key to my success in managing this illness. I have been able to make time for appointments with my specialist and get lab work done, and not have to miss work. Reflecting on that, I see that choosing a career that makes me happy and works around my life is worth more than a paycheck.”
If you’re thinking about telling your employer, it’s important that you know your rights. The Americans with Disabilities Act applies to private-sector employers with 15 or more employees. It requires employers to “…make reasonable accommodations — which could include a change in work hours or company policies — for people with disabilities” and prohibits discrimination in the workplace against people with disabilities. A chronic illness counts as a disability, and therefore any discrimination on the basis of hiring, firing, benefits, and promotions is illegal. Speak with HR for clarification on what this means within your company.
“At UC Santa Barbara I am enrolled in the disabled students program or DSP so when I do go into Kleine-Levin Syndrome episodes I have support from the school to get extensions on exams and papers. This helps me get back on track after episodes, but I still will never get the time or experiences I missed back.” – Jayne
Read about Jayne’s experience living and studying with a chronic illness on our Instagram.
You Owe No Explanations to your coworkers
People want to help, but sometimes you just want to be left to your own devices. You may find that well-meaning coworkers are coming at you with personal (and in some cases medical) advice and recommendations when you haven’t asked for their input. Four studies from Michael Schaerer found that advice givers feel a sense of power post-advice giving. There is also a sense of control and fear driving this behavior - fear it could be them and control of the unknown. So practice a few standard answers to offer so that you don’t feel put on the spot. For example, “Thanks [insert name]. I appreciate that you’re thinking of me.” That’s it. You don’t need to go any deeper in explanation.
Some days you will work better than others
Some days are going to be better than others. On Monday you could feel like swimming six laps in an Olympic sized pool and on Tuesday getting out of bed might feel like the biggest accomplishment. Listen to your body and remember that the expectations that you set for yourself are not etched in stone.
Your business might have to wait in order for your body to catch up. Colleagues might not always understand this, especially if on the outside you look “fine”. It is important to keep open lines of communication with those that need to be in the know, like HR or your manager. Also, have a plan for those days when coming into work isn’t possible or you have last minute appointments to attend to. When you show up for work, show up. When you need time off, take time off and actually rest. One of the most important habits to focus on is being intentional about how you spend your energy.
Tennis player Venus Williams who battles Sjogren's syndrome told CNN, “… there were days at the beginning where I did feel like I wanted to stay in bed. But I don't because it makes me anxious, I have to get to work. My motto now is that it all adds up, so if I can only do a little bit this day, it will add up, and it's better than if I get discouraged and don't do anything.” Listening to her body meant getting up, putting in the work, and giving herself grace on days where she couldn’t muster the energy. Do the best with what you have in the moment and remember that only you know how much you can take.
Find Your Support System at work
Just as there are those that will give you unsolicited advice, there are also those that will have your back. You know who they are so when you find them, let them support you.
Also keep in mind that your partner will be affected by your diagnosis. You may find it helpful to share some of your struggles with a trusted confidant so as not to overwhelm your significant other. Workweller Angela recalls when her husband Nathan was diagnosed with FCS, “Life as we knew it forever changed. Family life and careers are a lot to balance in good health, but adding a chronic illness brings so many new challenges.” A close network of family, friends, and coworkers that support you and your partner is vital. Angela’s saving grace was her peers. “Working in the healthcare field, I was surrounded by a community of understanding and gracious colleagues who supported me taking time away from the office to attend appointments and help process this new diagnosis. Working well to me means being able to continue to achieve in my career while still caring for the changing needs in my family.”
It’s important to remember that you can still have a successful career even though you aren’t as healthy as you once were.