To Work or Not to Work....

What do you do about work and earning an income when you are dealing with a chronic illness? Do you tell your employer? If you tell your employer, what do you tell them? How much do they need to know? What happens if you get sick and have to be in the hospital or have tests? How do you protect yourself and at the same time not cheat your employer?

All these are questions I have asked myself and have discussed in several groups dedicated to support for Crohns Disease and Ulcerative Colitis. As someone who has worked and raised a family while coping with this, I have found that there are several things to consider and do.

First of all, only you know if you are physically able to work. For some of us a physically taxing job or one with a high level of stress may be difficult. For some, a job sitting for extended periods of time would be next to impossible. So much can depend on you, your skills and what is available to you. This is why it's critical to have a strong relationship with your doctors and a comprehensive understanding of every aspect of your disease, including being brutally honest with yourself and your own limitations.

As far as telling your employer. Yes. They will absolutely need to know. Its not something you should bring up in an initial interview but at a more in depth second interview or at the time of a job offer, you should be clear and concise in letting them know that you have an autoimmune disease, you work closely with your doctors while being treated, and there may be an occasion where you will have a doctors appointment as a follow up to continued care. Many times this opens a dialog and you can educate them if they aren't familiar with your disease or you can then ask questions regarding bathroom accessibility and whether they offer an option to work from home on days you may be alright to work but maybe not up to a long drive in.  I have had some really good discussions and have had nothing but positive results by being open and honest and heartfelt. If you are already working when you are diagnosed, this is something you would want to discuss with your manager and the HR department.

And that leads me to the questions about time off and missed time. Unfortunately there will be times where your disease decides to take over your life and that can mean sick days, doctors appointments, tests and hospital stays. By having information about your disease and any special needs you might have in your file ahead of time, the management and HR departments won't be blindsided and they can usually make arrangements for you when time off is needed. One thing I have found to be especially helpful is to schedule my doctors appointments as early in the morning as possible. Usually this allows me to only take a few hours vs an entire day. I try to also schedule any tests the same way so that if its a long procedure, I have the rest of the day to rest and recharge and can return the following day to work. It goes a long way with your employer to be as accommodating as you can be with the things you can control. If you have a sudden illness or hospitalization, its helpful to have the numbers for your manager or HR Department in a place where your partner or family member can find them to call in for you as soon as possible. The FMLA (Family Medical Leave Act) is something you can take advantage of if you have been working there over a year and have exhausted your vacation and sick leave. The HR Department has to approve partial or full use of this, but basically within one year you are able to take 12 weeks of UNPAID time with no threat of losing your job. Again, this is UNPAID leave and has some restrictions so use this wisely.

Its important to understand that most people with chronic illnesses want to work. They want to feel productive and for some they really have to work to take care of themselves and their families. For me personally, working is one of my coping mechanisms. When I am working, solving problems, interacting with coworkers and accomplishing all my goals and tasks for the day, I forget for a while I feel like crap. It's pretty much that simple. Right now, I am close to remission and doing well and ready to get back to work. But that doesn't mean I don't have days where I really really feel horrible. I just manage it well now.

Some people ask me if I would be better off just trying to go on Disability. Well, its true, I could apply for that. Crohns is technically considered an illness that applies for disability. And I know some who really needed to go that route. I, for one, don't want to unless its absolutely my last option. I guess in some ways I am stubborn that way. Like I said before, working is my therapy. It keeps my mind active and focused on something other that my failing body.

So basically, its very possible to work and be productive with a chronic illness. You may need to learn something new, or possibly train to do something you can do from home, or go to part time hours. But it IS possible. You just have to really know your body, your limitations and be open and honest with your employer.