It’s common for people living with chronic (and often, invisible) health conditions to wonder about disclosing the facts of their illness and its impacts on their lives. When, and how, do you tell somebody you’re dating? Or your boss? Or the bag boy at the grocery store?
Fortunately, there is one simple answer that applies to every situation:
ha ha! A sick joke! I said it was simple, not easy.
The Case for Disclosing
You getting diagnosed with an incurable disease falls into the category of something your closest friends and family would be hurt NOT to know about. Better yet, they’re unlikely to use your diseased state against you. Tell them all.
For that matter, everyone who’s ever met you would probably want the chance to wish you well. Give them that chance.
Even if you’re not particularly religious, if you live in a red state, lots of folks around you probably are. You’d practically be doing them a favor by giving them a reason to pray for you. Spread the gospel.
If you need accommodations to keep doing your job, you’ll have to tell the boss. And you should do so before your performance suffers. Tell early and often.
Shrek says, “Better out than in.” He was probably talking about news of your condition! Get the word out.
When you’re thanking The Academy for that Oscar you’ve just been awarded, it’d be really awesome to thank your neurologist along with Jesus and Mom and the director. They like you. They really like you!
The Case for Not Disclosing
Telling somebody about your situation is like ringing a bell that can’t be unrung. No take backs.
You didn’t tell your mom about all those things you did in college or that speeding ticket or that perm. Why make her worry now?
If you can keep doing your job without accommodations, why muddy the waters by telling your boss? Just keep working.
As for your colleagues, anything you tell them stands a chance of ending up in the boss’ ear. Best keep mum.
If you just want to make conversation, do everyone a favor and read a book, or see a movie, or rob a bank, and tell us about that instead. Conversation killer.
Need a chair or a large-print menu? Try requesting assistance or favors without offering any explanation at all. You may be surprised at how often you can get what you want/need without offering a backstory. Please and thank you.
Theory and Practice
At one time or another, my experience disclosing has been a mix of all of the above. I have generally preferred to err on the side of waiting too long to tell, because I am all too aware of the “no take backs” danger. And let’s be honest — telling anybody that you have a chronic/degenerative/incurable/hard to treat/painful disease is like dropping the world’s biggest lead turd into a conversation. Why rush it along?
It also took time for me to integrate being sick into my self concept, and to get comfortable enough with it that I could mention it when appropriate. Remember that feeling of being a really self-conscious pubescent in a traitorous body? (Nobody? That was just me?) Well, the early days with MS felt sort of self-conscious like that, and I was in no hurry to point it out to anyone.