For those of us lucky enough to keep working with chronic disease, it is a blessing, but it does still come with a price.
So what's it like?
Chronic Fatigue. Feeling exhausted even after a good night's sleep. No amount of caffeine or rest can overcome it.
Brain Fog. Difficult remembering things or focusing.
Pain. Pain when doing typical daily activities like sitting, typing, or talking.
General Malaise. Feeling unwell or tired. Like you have the flu even when you don't.
Unpredictable. You never know when a flare will happen. You could start your day feeling great, and by lunch, a flare hits, and you are down for the count.
Irritability. If having unpredictable symptoms like pain isn't irritating enough, you might be aggravated by the clothes or shoes you are wearing or the lights in the room.
Lonely. Many chronic diseases have invisible symptoms. Only you or your loved ones may know that anything is going on.
So what can you do about it?
Give yourself a break. Take breaks throughout the day, if you can. Take your vacation time. Don't overbook yourself. It is ok to say no or not now. This is a do as I say, not as I do scenario. I am horrible at giving myself a break, and luckily I have people around me that encourage me to do so. I am always happier when I give in.
Make yourself comfortable. Seat cushions, armrests, and footrests can be great desk additions. Ergonomic setups are even better and can sometimes be funded by your employer.
Find resources at work. Some employers have communities for the differently abled or employee assistance programs that can help you. Whether it's a friendly face to share your story or troubles with, or free therapy, every resource counts.
Find your community. I could not believe how much better it made me feel just to know others at work were going through the same thing or something similar. Check on each other when you can, even if it is just once a year. It matters.
Share how you are feeling. Of course, it is taboo to show weakness at work, but sharing with your peers, your boss, or your employees that you are having a bad day, week or year can be beneficial. People can tell when you are not fully engaged in a conversation or are taking longer to complete a task. Letting them know why helps them know that you care about them and the interaction that you are having or the work you are doing. This is something that has taken me years to be OK with and only something I started doing when I saw how chronic disease was impacting others that were not ready to be vulnerable at work.
Look into FMLA. The Family Medical Leave Act requires employers to provide employees with job-protected, unpaid leave for qualified medical and family reasons. Every state has their own rules for what qualifies under FMLA, so do your research and talk to your doctor. Those of us with chronic diseases have a lot of doctors appointments and days where we just need a day off. FMLA can help you do that without using all of your paid vacation time.
Check out the resources page for organizations that can you with other tools to make working and living with chronic diseases easier.
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