Getting a new chronic illness diagnosis can be overwhelming. A million questions and worries pop up – can I continue working with a chronic illness? How will this impact my happiness? My family? My social life? My career? You may have pushed through symptoms to make it through school because you had a career goal or a passion you weren’t willing to give up. If you already have an established career, you may have experienced the unnerving moments in which you think, “can I keep this up?” Know that we’ve all been there. Your Friends in the Fight™ know how it feels and have found some ways of getting through it.
1. Finding a job that is a good fit for you
A year ago, I felt stuck, like I was at a standstill in my job. Yes, I was good at it. It gave me purpose, I believed in our mission, and my coworkers were amazing. But I was miserable – I was exhausted all the time, constantly finding myself nodding off in the car or at my desk. I had no energy after work for anything – not my friends, hobbies, or even my spouse. My symptoms were on the rise, and I felt hopeless. I would make it out of one flare-up just in time to get slammed with all the work I’d missed and fall into another downward cycle. This was when I knew I needed a change.
Here’s the thing: in many ways, it was a wonderful job, but it didn’t fit my particular needs anymore. I had to stand all day (not great for POTS), there was only one toilet, and sometimes it broke down (pretty rough on bad GI days), I had no kitchen for cooking lunch with my absurdly restricted diet and no quiet space to go when I felt overstimulated.
At some point, I was loaned a copy of Surviving and Thriving with Invisible Chronic Illness (definitely read it if you haven’t already). Ilana Jacqueline, the author, devotes an entire chapter to school and career. I remember reading, “the reality is that you will never have a life uninterrupted by illness,” and feeling resonated with the:
“…incredible sadness. The life I had hoped to live was forever changed. I could no longer ignore that some of my life goals would have to be altered. The second emotion, however, was incredible relief. Fully understanding the limitations of my disease and starting to envision a more realistic and functional life plan gave me a reprieve from the dark cloud of uncertainty.”
Prioritize your health needs in addition to the other factors when looking for a job. As Ilana Jacqueline puts it,
Is a person with rheumatoid arthritis going to be a massage therapist? Is a patient with ulcerative colitis going to have a stupendous career as a food reviewer?”
It may seem obvious to consider your health needs before anything else when looking for a job, but in actuality, this is not what we tend to focus on. Ultimately, it is hard to continue on in your job when you feel a lack of support because your basic needs are not met.
2. Advocating at your job when working with a chronic illness
No job will be a 100% perfect fit, but there may be ways to tweak things in your favor! Once you feel comfortable enough to self-advocate, here are some tips:
- Write down moments throughout your work day in which a change could make a difference.
- Take note of the ways in which the quality of your work would be enhanced by an accommodation.
- Schedule a meeting with a supervisor you trust (or a supervisor and coworker you trust).
- Remind them of the value you bring to the company and the ways in which you’ve been successful.
- Then, give a short description of your diagnosis and state that you need to adjust some factors in your life to move forward now that you have the information.
- Mention the list you made and choose the most pressing 2-3 accommodations and how they would increase your quality of work.
- Lastly, politely ask if they see a way to make those changes a reality.
This works best if they see you as a valued employee, so take every opportunity to show them how great you are. If someone needs help with a project that will be a good fit for you, jump on it! When you feel well, bring your A-game and hold yourself to your highest standards – show up early, bring positive energy, and work hard. Being eager, kind, and hardworking are qualities that never go unnoticed.
Note: it may feel awkward at first, but employers do have some responsibility to accommodate disabilities and illness, so speak up. Our Friend in the Fight, Hannah Olson of Chronically Capable, is working hard to make sure employers can meet the needs of our community. Learn more about her work here.
3. Steps you can take on your own when working with a chronic illness
If your employer is unable to meet all of your requests, or if they want you to meet them halfway, there are some things you can do.
- Maintain positive habits like an early bedtime, eating well, and managing your spoon output.
- Set up a morning routine that is slow, deliberate, and involves meditation, movement, or other methods for getting your body and mind ready for the day.
- Have a person or two who you can talk to (either coworkers or someone reachable by phone) if you’re stuck at work and feeling iffy. It can reduce symptoms by simply sharing your fears and pain with someone.
- Experiment with different clothing to find whatever will support you at work.
- For me, that meant supportive footwear, bras that don’t aggravate my spinal symptoms, compression stockings, and layers to throw on and off based on hot flashes and chills.
- Bring whatever gear will help you. Needs snacks to keep you going? Ice packs or heating pads for pain and temperature management? Masks for odor sensitivity? Mighty Med Planner for all of your meds? Consider getting an extra set of all of your gear to leave at work. And if you feel funky, don’t forget to use it!
- Make sure your chair/desk situation is a good fit for you.
- Have a list of menial tasks for brain fog moments so that you can still be productive.
- You know your limits, don’t push yourself too hard – it is better to periodically rest your body and mind then to try and push through and crash.
4. Find meaning and purpose outside of working
The reality is that you may need to give up your dream job. Many spoonies choose less fulfilling jobs that are better suited for their bodies or take time off from work completely. Whatever your work scenario is right now, remember that you can always find meaning and purpose in life outside of your job! Volunteer at a local non-profit, call elected officials to impact the world around you, create some form of art, or mentor someone who needs it. Write to loved ones about why you’re thankful for them. The options are limitless; there are so many ways to explore your passions and make the world a little brighter.
“Nice to meet you! So, what do you do?”
You know that moment – you’ve just met someone new, and they’re hoping to learn a bit about you, so they ask, “So, what do you do?” This question can be tricky – maybe you’re unable to work, or at least not in a field of your choice. Situations like these can feel awkward and even isolating to know that your answer won’t give this new acquaintance an accurate picture of the person you want them to see.
Feel free to share with them what you do that matters! Just because it may not involve a paycheck doesn’t mean it’s worthless. You can also share a degree you have or a field you used to work in and then add, “I’m taking some time off right now and have been getting really into ___________.” If you want to share the reality of your health situation, try briefly stating, “I can’t work right now due to chronic illness, but I’ve been spending a lot of time ________.”
And, just a reminder here that this question may not be the best to ask others. The person may be a spoonie or caring for an aging relative or raising children and feel uncomfortable with the assumption that they are “working” in the traditional sense. Perhaps more importantly, our careers in no way define our worth. Everyone, whether fully employed or otherwise, benefits from asking better questions. For example, we asked some Friends in the Fight™, and these are some questions they’d rather be asked:
