She was struggling with whether to tell her team that she lives with a chronic disease, multiple sclerosis. There seems to be a tipping point when disclosing a long term chronic health condition starts to feel like a necessity rather than a choice. Low impact symptoms become more debilitating, symptom ‘flares’ last for longer periods, and new symptoms are creeping in.
Although she was diagnosed two years ago, she hadn’t told anyone at work about it. As far as she was concerned, there hadn’t been a need because the disease hadn’t interfered with her work. Until now. She was starting a new drug therapy that required a one week hospital stay and, at least for the first six months, would leave her feeling sick and exhausted for two days each week.
The thought of discussing this with her team made her anxious and depressed. She told me about a senior director who had been open about his cancer, surgery, and follow up treatment. People seemed to rally around him. But why wouldn’t they, she asked? “Cancer is frightening and tragic. Everyone acted like he was a hero who was going to war.” And then it was over – and it seemed like the war was won. When her boss returned to work, life returned to normal. It looked, at least to her, cut and dry.
But a chronic disease is not a single battle. By definition there is no known cure and symptoms that impact your work are not ‘cut and dry’. Chronic disease lsts a lifetime, not a few months or even a few years.
I suggested a journaling exercise regarding this. I’m sharing (fyi – she agreed to let me share this here) some of what she wrote:
- Will they think I’m being dramatic, or worse, exaggerating my difficulties? They can’t see what I’m experiencing.
- Will they lose trust in my ability to get my job done now that I’m not well? They rely on me to be the glue that keeps the moving parts together.
- Would they lose momentum and focus when I need them to be more motivated and focused than ever? They look to me when they falter.
- Will they think I’m burdening them unnecessarily with my problems? It’s my responsibility to solve, not create, problems.
At the end of her journaling exercise, she’d decided to say nothing and continue on as before.
It’s easy to see how she reached that conclusion. Yes, her job is to help others do their jobs to the best of their ability. But what if she could no longer do this in the same way? What risks lay in not confronting the changes she faced?
I asked if she could imagine a way to re frame this picture. I asked her to consider how she might open the window to find opportunity rather than keep it shut in fear.
Could she frame this so it’s an opportunity rather than a loss? Could she envision a way to discuss this so she displays strength rather than weakness?
I see two choices when you live with debilitating symptoms that impact the way you feel, what you are capable of doing and the way you work. Either you hide or you share this information. Yes, there are situations where hiding this is necessary for your job safety. But when there is the possibility to share it, you are more likely to have conversations that offer the opportunity for productive alternatives. Sharing this acknowledges that problems (call them stumbling blocks or challenges–any euphemism you want) happen. And, the most effective option is to address them ‘head on”.
The bottom line? When symptoms impact our actions (or our inability to act in the way that’s expected), we do significant damage to our sense of self and our credibility with others when we hide the situation. Damage that we cannot afford, physically, mentally or emotionally.
Do you live with a long term health condition? Ask yourself: What gets in my way of turning loss into opportunity?
For more ideas on how to talk about living with long term chronic health conditions, see my post: 5 Ideas for Talking about Illness & Performance and my booklet, “Talking About It”
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