Recently I was asked: Do you really believe that continuing to work is really harder when you live with a chronic illness? I answered, Yes, naturally.
Soon after, several times during our call, a client asked if other people struggle as she does at working with an illness. That’s when I realized that my knee jerk response, that of course this is harder for people living with illness, isn’t obvious to everyone. Even people living with illness.
So, here’s my definitive statement on this. Yes, work and illness are a tough duo! Look, I’ve found there’s enough “meat” here to write a weekly blog, produce a 40 page workbook, 3 booklets on career, co-author a book and get hundreds of inquiries monthly about my services.
But maybe the question should be what makes this so challenging?
Before going further, I’ll offer a definition for chronic illness: “…an illness that is permanent or lasts a long time. It may get slowly worse over time. It may lead to death, or it may finally go away. It may cause permanent changes to the body. It will certainly affect the person’s quality of life.” There are many definitions. Do you have one that’s better?
Experts agree that chronic illnesses typically (not always) share 3 characteristics:
- The symptoms are invisible to others.
- Regardless of diagnosis, the symptoms and course of disease varies from person to person.
- Regardless of diagnosis, it is impossible to predict the course of illness or what will trigger worsening or improvement of the condition.
You can learn much more when you read my book, Women, Work and Autoimmune Disease: Keep Working Girlfriend!
FYI – I regard chronic illness, chronic syndrome or chronic condition as the same for our purposes. They each can create severe and limiting pain or fatigue with symptoms that impact a person’s life in the same way.
So, what about these 3 characteristics makes working such a challenge?
- Unpredictable. People living with a chronic illness find that even the most solid back-up plan can fail because it’s impossible to be sure when and to what degree symptoms will flare. And that can become a big problem when you’re in a work situation in which reliability is critical.
- Variable – Unfortunately, there are no guarantees in the world of chronic conditions. The course of illness, severity of symptoms and response to treatment vary dramatically within an individual, from person to person and among different diseases. Even with a diagnosis, there’s no road map to rely on.
- Invisible – Some people find this to be a relief, particularly at onset. They don’t want to nor feel prepared to discuss health problems, particularly at work where value often relies on ability to deliver. But invisible becomes a problem when symptoms impact your ability to perform and others notice the changes and/or are affected by them. This can force your hand to disclose. And even after disclosure, the need to talk continues. Others don’t know your limits unless you tell them. And too often, they forget or minimize your situation unless you remind them. You bear the taxing burden for good communication.
The truth is that most of us are completely unprepared for all that comes with bad health. Isn’t illness something that happens to someone else … and only to old people? Being too tired or in pain puts you “out-of-synch”. Life becomes much more complicated than you ever could have imagined.
Before you despair, here’s the thing. Do you think you did a pretty good at getting your life “in order” and making things happen prior to illness? If you’re nodding yes, then most likely you’ve got the life skills you need to manage this. And if you haven’t done so well on that score thus far, here’s your opportunity to develop this competency. The question you might ask yourself is: how can I tap into this?
I’m no superwoman. I don’t believe that developing multiple sclerosis at 29 and ulcerative colitis at 40 was a blessing in disguise. But when faced with living a life with this much illness, I was forced to develop muscles I didn’t know I had. I realized that I had to develop into a more capable, well-balanced and intentional person to manage the unpredictable, variable and invisible diseases I live with.
How do you get there? Start with your foundation because illness tests us at our core. Develop your capacity to respond to disappointment and setbacks with resilience and hope. Search for the resources, tools, mentors and coaches for your team.
Most importantly, wherever you go and whatever you do with this, remember you aren’t alone. Whatever work you manage to do is only good if it bring you a sense of competence and satisfaction and allows you to be more than your illness. Work and illness – a difficult but doable duo.