Recently, I was a guest on Paloma Health’s podcast, “How to Juggle Work with a Chronic Thyroid Condition”. I was asked about the obstacles a person with chronic illness faces in the workplace. If you’re reading this, I don’t have to tell you that’s one long list.
Topping my Top 10 List of challenges in working with a chronic health condition is communication. I’m making a distinction here between talking with no interest in a response and communication where there is a give and take. Communication is a loop, often transactional (here’s a simple visual), and is too often overlooked or minimized in light of all of the other challenges facing a person with chronic illness.
In my experience, the first thing that comes up in any discussion about communicating around illness is ‘disclosure’. It makes sense because it’s the first step in this journey. But disclosure is rarely a “one and done” kind of thing, especially if symptoms wax and wane, are unpredictable and impact your performance. It almost always requires ongoing information and that’s where it gets messy. Too often, it’s these ongoing conversations, the transactional interactions, about what you can or can’t do at any given time, that take the biggest toll on already taxed resources. And cause people either to voluntarily leave the workforce or lose their jobs.
I’ve written about 50 posts on this topic over the years. This time, I’m offering several nuggets from different sources revolving around this central theme of communicating about the chronic illness that you live with.
1. Another guest on How to Juggle Work with a Chronic Thyroid Condition”, Hannah Olson, founder of Chronically Capable, said:
“…60% of our population lives with at least one chronic condition (that doesn’t include disabilities) and 70% of disabilities and illnesses are invisible. That means that your boss would not know about this disability or illness, unless you disclosed.”
I thought about how frequently clients talk about yearning to work virtually. This became especially true during the Pandemic when the opportunities for virtual work exploded. As someone who works virtually, I understand that desire. But working virtually does not necessarily mean that you are self employed, that you don’t have to answer to others, or that you get to set a schedule that works around your needs. Regardless of your employment situation, if your health impacts your capacity to perform your job at any given time, it’s most likely that you will have to communicate with someone about this. You might choose not to discuss this at the start of a working relationship. But at the end of the day, it’s on you to communicate effectively regarding any changes that affect others. Virtual work can be a game changer when you live with disabling symptoms. But it won’t change the need to maximize your capacity to engage effectively in your transactional communication.
2. “ I Have a Disability Too, I Told My Patient – Disclosure can benefit patients and the healthcare system alike” , by Diana Cejas, MD MPH June 30, 2021.
NOTE: The following has been excerpted from an opinion column in MedPage Today, was written by a cancer and stroke survivor who is also a pediatric neurologist.
Dr. Cejas writes:
“It’s important to note that there’s some controversy about whether physicians should disclose their disabilities to patients…. I often wonder how much of these arguments against disclosure are means to uphold medicine’s ableist status quo. ….
I don’t know when I’ll let another patient know about my disabilities. I do know why I’ll tell them: I want them to know I understand what they’re going through. I can guess they’ll respond with the same sense of community and relief that all of my other patients have felt. My other guess is they’ll look at me a little differently. And know that we are truly in this together……….
Thanks to years of physical and occupational therapy, my physical disabilities are largely invisible. I have the power to choose when and where to disclose; a privilege not afforded to all. I don’t take disclosure lightly….
We’ve had richer conversations because they knew they could trust me.”
Dr. Cejas seems to be an extraordinary physician who chooses to let her patients know about the disabilities she lives with. She shares the unique insights and perspective from her own experience because she’s found that it makes the experience that much better for everyone involved. This is no simple task. I’m sure she’s put a lot of thought into why she does this, what she says, and when. I’m also sure that the conversation doesn’t stop with her first disclosure. It sounds like she works from a place of inquiry rather than assumption and gauges what her patients and their families want and need to know. She knows her strengths and plays to them rather than hide out of fear of what some might perceive as weakness. She utilizes conversational tools to foster the best possible outcomes. I have a hunch that these skills would be helpful in any situation
3. I know that after 41 years of living with unpredictable, invisible and disabling symptoms, I still question myself when I refer to how I’m feeling or my limitations — whether it’s in professional or personal settings. Even as my health and my capacity for I continue to change along with my health. My own experience — and I find it’s true for most of my clients — is that talking about symptoms that get in your way requires care and focus.
That’s why I’ve published the 3rd revised and improved edition of my popular Career Guidebook series that includes the booklet, “Are You Talking?” It covers disclosure, the ongoing conversations, setting boundaries and more. These are strategies that you can apply in all aspects of your life. NOTE: If you already purchased a previous edition, I’d be happy to send you the link to the revised edition at no cost.
Bottom Line? Effective communication isn’t a science but it is an art. Practice doesn’t make perfect but it can go a long way toward making your life easier.
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