(Names and details have been changed to protect privacy)
Chronic illness can mean that we have to grow and change in ways we couldn’t have expected. In my experience, the ability to communicate effectively is fundamental to being able to thrive, not just survive, when living with illness.
One reason is that most symptoms from illness are invisible. Other people have no idea what you’re experiencing unless you tell them. And even when some effects are visible, others can’t understand how this impacts you unless you tell them. This means that the burden is on you to describe your subjective experience of debilitating symptoms that impact your life.
Jim lives with crohn’s disease. The disease has been getting worse over the past ten years and he’s working at an increasingly uneven pace. Although he has always done well at his job (a senior accountant in a Big 10 Firm), his colleagues and supervisor frequently express frustration about what’s not getting done or getting done late.
Jim hasn’t told anyone at work that he lives with this disease. He doesn’t see why he should have to since it’s nobody’s business. But he’s fed up that colleagues are annoyed by his absences or missed deadlines as he’s struggling to manage difficult and painful symptoms. He’s thought about leaving his job and taking advantage of his private disability policy but it won’t be enough for his family to live on. He also thinks he’d be bored and unhappy if he doesn’t work.
Jim describes himself as a private person who doesn’t talk easily about his feelings or his needs. “I’ve always been a man of few words and it’s never been a problem before,” he told me. Clearly this isn’t working for him now.
Jim realizes this. Chronic illness has created problems for him that require him to stretch his comfort zone and develop new skills. He sees that he has to start by developing his capacity to talk about his situation sufficiently so he can continue to work.
Living with chronic illness can mean that you have to grow and change in ways you wouldn’t have chosen.
Helena says
Communication is so important, whether it be at work, in a marriage, with family or friends. I used to really shy away from having conversations about my chronic illness and I never quite felt true to myself. When I finally did start talking about it, a funny thing happened. The shame around having an illness disappeared and I become more open and confident.
Rosalind says
Thanks for sharing this. It’s a valuable story for all of us to hear.
Anonymous says
It is very hard indeed to bring up chronic illness, whether the work is paid or unpaid. Whenever I have tried to explain my situation — and yes, I have the book and have garnered myriad other advice — I get a freeze out.
I do a great deal of unpaid eldercare work for a very difficult relative to whom I’ve never been close. The situation gets complicated when you’re dealing with the sick and needy elderly, and various family members who all have health stresses of their own.
When people don’t want to hear it, they don’t want to hear it.
I have always worked to minimize the effect of my illness on other people. I have a sister, on the other hand, who is a full-time whiner and has been as long as I remember. We both have health challenges, she is firmly using her beloved identity as “sickest” to minimize her involvement in eldercare. I simply am incapable of not contributing as much as I can.
Trying to communicate my own health and financial difficulties to this and all other members of my family — I am being expected to do work for a not-close relative that most other elderly would pay outsiders for.
I have, in the past, sent not only published writing of my own in this area, but the official educational pamphlets for my chronic illness. Freeze out. Any advice?
Rosalind says
No advice. Just questions, mostly. It sounds like this makes you pretty unhappy. Or at least it’s a source of frustration. What do you want from these interchanges? What can you do differently to make it happen?
Anonymous says
I think the only thing I could have done was to not bring it up at all. The relative I tried to communicate my situation to said she wouldn’t even finish reading my email, and furthermore, I felt that even communicating anything to her, and I did so in the most carefully measured terms — was causing her health stress.
The only thing I could have done was to just keep my concerns to myself.
Sarah Hill says
For anyone denied for disability just because our disability is “invisible”, I’m spreading the word about this wonderful lawyer: http://www.disabilitydenials.com