Coming out about your condition

To tell or not to tell. Regardless of which chronic health condition you may live with - whether it has a stigma attached to it (HIV, diabetes, mental health disorders) or is more in the sympathetic national spotlight (breast cancer) - when you tell someone about it, it can change the way they look at you. This month’s Blog Carnival topic, disclosure, brings to mind those of us with invisible illness – conditions undetected by a person’s appearance but still very much real and life-changing. Because of the stigma and the preconceived notions surrounding living with a health condition, the idea of “coming out” and sharing your condition with others can be understandably terrifying and, perhaps, all the more important of a decision. Here are few Health Activists who wrote about their experiences with “coming out” and disclosing their health condition:

 

A columnist for The Huffington Post, John Falk comes out about his Chronic Fatigue Syndrome (CFS) in his post, Chronic Fatigue Syndrome and Psychotherapy: “When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.”

 

Blogger Christopher Banks, in his blog’s inaugural post, The fish needs another testicle, talks about the reaction to his coming out about his bipolar disorder: “Those judgments range from the lightweight – a friend commenting that he now understood why I got so angry when I was stuck in traffic (!), to a former employer turning me down for contract work and telling others in the organization not to contact me because I needed ‘to be left alone to rest’. I was in perfect health at the time, with a full work schedule, and at that instant I regretted having disclosed my mental illness to an employer that I thought was supportive and could trust.”

 

Zoë Kessler writes about coming out to her employer about her ADHD in First Day Back: Follow-up to Coming Out ADHD: “While I don’t suggest that my level of openness is advisable for everyone, I still contend that overcoming mental health stigma has to start somewhere – and, by God, I don’t mind starting with me.”

 

Gary Davis also came out to his employer (he suffers from manic depression), but with more negative results. His musings on when and when not to reveal your condition to your employer are covered in his post, Chronic Health Conditions: Do You Tell Your Employer: “Some people wear their heart on their sleeves. It is hard for them to keep information private. Other people feel that their life has been invaded if they give any information out. I'm not sure there is a ‘right’ answer or a ‘wrong’ answer.”

 

Not a blog post or article, but a video, CNN reports on HIV positive Jay Gavin coming out to his church in Coming out as HIV positive to church.

 

In a post which also fits with last month’s topic (writing a letter to your condition), Trese writes about why he won’t “come out” as HIV positive in Dear HIV: “I conceal your identity from those around me. You remind me, ‘No one will understand. You’ll be pigeonholed and stereotyped.’ You pretend to have my best interests at heart, but I know you just want to keep me all to yourself.”

 

For me, there is no clear answer of whether one should come out or not. The pressure of possible discrimination is very real. For those who suffer from these sometimes debilitating conditions, coming out, disclosing it is difficult. But the other side of this is that the only way for things to change, and for the stigmas to dissolve, is for more and more people to talk about having these conditions. As always, information is the clearest solution, it’s just up to the individual to decide if those in their life are ready for it. For the Health Activist, this question is particularly relevant.

Can someone be an effective Health Activist while maintaining anonymity/secrecy about their condition with those they know? When you've revealed/concealed your condition in the past, have you regretted it?