Guest Post: Rosalind Joffe (privacy and disclosure and living with chronic illness)

I wanted to know: How do you handle disclosing chronic illness, in the workplace and I guess, in your personal life as well. How much is too much and what is the responsible information an employer deserves to know?

I’ve lived with chronic illness for almost 30 years and I still find that disclosure isn’t simple. Let’s be clear. Disclosure means talking about something for the first time – in this case living with chronic illness. The on-going conversations about chronic illness aren’t necessarily easy. But I’ve found that the first conversation is often the hardest.

That’s why I suggest you consider the following when disclosing to a new friend or your supervisor: Be as public as you need to be and as private as you want to be.

This means that you don’t HAVE to talk about this with anyone unless it’s hurting you not to do so (“as you need”. And, you can say as MUCH or as LITTLE about it as you feel comfortable sharing (that’s where your sense of privacy should be considered).

If this seems overwhelming or is making you anxious, you can simplify the situation by asking:

• What do I hope to achieve – my desired outcomes -- by disclosing to this person?
• How could this information impact my relationship with this person/people?
• What is the best time and place to say this?
• What does this person need to know for me to achieve my desired outcomes?

The last question leads to the heart of this issue: what do you want to say and what not to say.

Chronic illness is unpredictable and it creates a level of uncertainty for you and for others. Because work relationships are inevitably based on your performance, you want to assure this person that you’ve got the situation under control and your illness will not become a burden for anyone else.

Similarly, when you’re telling a new friend or someone whom you don’t know very well that you live with a chronic illness, start slowly so you don’t overwhelm the other person with information. I suggest keeping 3 things to keep in mind:

• Know the facts about the illness and stick to them.
• Talk about how this affects what you can do rather than vague descriptions of how it feels.
• Keep the conversation as unemotional as possible.

If you find this information useful, chapter 6 Talking About Your Chronic Illness of my book, Women, Work and Autoimmune Disease, Keep Working Girlfriend! describes the various situations you might find yourself in and offers more options to consider.

Living with chronic illness can be an isolating experience, particularly if you don’t share it with those around with you. But sometimes we can err on too much sharing and even our closest friends and allies will feel they’ve heard more than they want to know. It’s in your best interest to develop your sense of what is enough.

Thanks, Rosalind! I will be back tomorrow to do my best Shakira impression, because my hips, they speak the truth.


Maureen Hayes said…

This was a good question because I think it is something we all struggle with, whether at work or in relationships.

I am participating in the virtual book tour as well. Rosalind will be doing a guest blog on Nov. 20th on the issue of developing your skills to be the most valuable YOU you can be, at work or in life! I encourage you and your readers to follow the tour each day and learn more about the book and Rosalind.

Thanks for sharing your blog with us. I plan on adding you to my blogroll.

Lisa Milton said…
Thank you, Rosalind. Great post.
Vicky said…
Hi Lisa,
I added you to my blog roll and I am enjoying your site.
Health Advocate said…
true to break the news of a tragedy physical or mental isn't easy and we fear of losing on what we have a brave job...keep going.
Yes it is always a dilemma because you feel you are nearing an end and why to drag someone else in it unnecessarily.
Maybe sometimes a small little journey gives more happiness than a lifelong gallop.Don't be afraid to listen to your heart if it does say something...listen to it.And be honest to the other person who is involved here.
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No matter what others say, I think it is still interesting and useful maybe necessary to improve some minor things
Lucky Knitting said…
hi lisa,
my name is lisa too and i have sjogrens too. i have read your blog because i googled dysphagia and sjogrens i have had this problem with rice and i have almost chocked so scary and upsetting. my email is
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