If you're living with a chronic illness, you're in the right place.

Monday, September 10, 2012

Invisible Chronic Illness Awareness Week

1:13 PM Posted by Tiffany Taft , ,

For the millions of people affected by an invisible illness, there comes the time where they must decide how to disclose that they are sick, to whom, and in what level of detail.  It seems like it should be a relatively straight forward task:  open mouth, speak words "I have [insert illness name here]."  But often, disclosing your chronic illness status feels like navigating a minefield.  What we do know from the research is that people who disclose their illness to others report significantly less psychological distress and have better illness outcomes than people who choose to keep their illness identity completely hidden.  Easier said than done, Dr. Taft.  

I think the mantra of disclosure is "Easy Does It."  Think about the people in your life and who you trust to share this information with; this will likely be on a continuum of "Absolutely" to "No Way."  This can be tricky with people like your boss, teachers, professors, co-workers, or other people who are in positions of authority (or position to influence those of authority) over you.  Before you disclose here, read up on your particular illness and its protections under the Americans with Disabilities Act (ADA).

Think about what you're going to say and your answers to possible questions that you may get asked once you do disclose.  Less is more when starting the disclosure process.  Tell them why you want them to know about your illness. Only you know your audience and how much detail they may be open to knowing about your experiences.  For those you're closest with, it's likely safer to go into more detail than an acquaintance that may have noticed that you're not feeling well very much the past few months.

Then think about how you're going to say it.  Generally, speaking in a calm rather than overly-dramatic way will lead the other person to be more receptive to what you're telling them.  However, don't hide your feelings or feel that you cannot express how important of an issue this is for you. 

Think about how you're going to respond to their reactions.  You may find yourself having to educate the person about your condition.  You may need to provide them with emotional support as they process your news.  Much of this will depend on your relationship with the person before you disclosed.  

Finally, ask them to be there for you.  Ask them to keep what you've told them in confidence.  Tell them that their listening so you can talk about your illness is the biggest help they can offer you (this is especially important for people who go into advice overdrive).  

Remember, we can plan until the cows come home about how a particular scenario is going to play out, but so often the scene in our minds differs, sometimes dramatically, from reality.  Some people will handle your news well, others may not.  You cannot control this, but you can prepare yourself mentally and emotionally.  

If you have some disclosure stories or tips to share, please do so in the comments section below.  We'd love to learn from you!