Tips for Sharing Your Diagnosis

A Very Scary Moment

We sat in the car, eating our meals. I pulled out my talk, took a deep breath, and read it to my husband. As I told the story of my diagnosis, I very carefully did not look at him. I knew I was dropping a bomb on him. Still struggling to come to terms with a diagnosis of depression, I knew that my updated diagnosis of bipolar disorder would be even more challenging for him. Yet, it had to be done. We don’t keep secrets from each other.

Over the next few days, the topic of my disorder came up a few times. Quickly, my husband made it clear that he had no intentions of telling his family and that I was not to post about it on the Facebook groups to which the wives of his co-workers belonged. I understand his concerns: he is not interested in being stigmatized for living with someone “crazy,” which is entirely possible given the culture of his family-of-origin and his industry.

Those are his worlds and thus, his decisions. I acknowledge and understand that. It gave me pause, though, to consider just how open I should be about my diagnosis in my life in general. My parents raised us with a privacy-first mindset with a need-to-know disclosure method.

I hated it.

Rather than being protective of our family, it felt to me like we were hiding secrets and projecting a false facade of our family. It created a sense of shame around some of the experiences that many families experience.

Rather than freeing me from the expectations and judgment of others, it became a silent judgment on my (low) self-worth. I’m confident that this was not my parents’ intentions and certainly, their decisions fit with the culture in which they were raised. For me, though, it was an unhealthy choice.

Sharing My Diagnosis in a Healthy Way

So, as a teen and adult, I’ve tended toward the other end of the spectrum: full transparency. The challenge with that, I found, is that not everyone wants to hear my mess. It can be intimidating and off-putting, especially when we (the suffering) struggle to separate from some of the stories of our pasts.

As a result, I experienced the reality of my parents’ concerns: I was stigmatized, occasionally ostracized, and confused by the reactions. Over time, I started to develop a fear of transparency, although I still believed it was a healthier approach to life.

So when I got my updated and final diagnosis of bipolar disorder, the question for me was not “Do I tell?” but “How do I tell?” In conversations with Mike, my therapist, I realized there was another question in there: “Who do I tell?”

He suggested that I start small, with just a circle of people I trust and feel safe with. The wisdom in this advice is that it gave me space to share my experiences in small bits. Not only did that inner circle have the ability to slowly adjust to my diagnosis, but I also did.

What I found was that with each telling, I became more comfortable and also found that most reactions fell into predictable patterns. When I was asked questions, I knew that they came from a place of love, not accusation, because of the relationship between us. Common questions included “How long have you known?” and “What happens now?” as well as other questions about my experiences and how I (and my family) were reacting to the diagnosis.

The other thing I learned was how few people were surprised. One friend remarked, “Oh, I thought you knew that already!” Others said, “Well, it certainly explains some things.” It turns out that those who know and love us well are rarely surprised by our diagnosis; if anything, they are more often relieved that we are getting help for it.

Getting these loving responses from those in my inner circle gave me the courage to share my story with others beyond it. I worked with my therapist to discuss each of these and come up with a plan to share it.

 Lessons Learned from Sharing My Diagnosis

As I moved outside my immediate circle and shared my story, I found two reactions. One was strongly negative and stigmatizing. Sometimes, this took the form of jokes (“Well, that explains it!”) and sometimes, I was ghosted. The other side of the spectrum was love and hugs. “Oh honey, I’m so sorry to hear you’re going through this and I’m so glad you can get help.”

What I realized over time is that their reactions say more about them than they do about me. People who judge me also judge themselves. Those who responded with love often love themselves. Stigma is driven by fear, and those who live in fear (which doesn’t require an anxiety diagnosis) tend to respond more extremely and negatively. Understanding that point took much (though not all) of the sting out of the negative responses.

I also realized that in addressing the questions my initial friends had, I was able to understand and address the concerns my broader circle didn’t know how to ask (or ask kindly). I had already rehearsed these answers, and while I felt a little flat-footed at the time due to the attitude around the question, I at least had a way to handle myself in the situation.

Eventually, I realized that stigma comes from a sense of ‘other.’ When people with depression, anxiety, bipolar, or another flavor of mental illness hide in plain sight, it grants permission to others to not see us, to not acknowledge the realities we live with. It also grants permission to stigmatize others who are brave enough to come forward.

With this in mind, I made the final decision to publicize my diagnosis on Facebook. That experience was flat-out amazing. I got a lot of warm support and discovered many of my friends were living with similar challenges. In sharing my story, others gained the courage to share theirs.

There’s a glaring absence in this story, and that is coming out to my employer. That’s because I was on a sabbatical at the time that I received my diagnosis and my career path remains uncertain at this point (although maybe this writing thing will work out for me).

Talking with Your Employer

From talking with others, sharing your diagnosis with your employer is, I believe, a necessary and dangerous step. If you are considering this, I would first connect up with a lawyer or someone well-versed in the Americans with Disabilities Act (ADA) or your country’s equivalent and get some advice on how to handle it. For those in a job transition, the advice I’ve gotten is to wait until you’ve secured and started in the new job (including the completion of any probationary periods) before approaching your HR team with your medical status. (In fact, if you’ve told your company about your diagnosis, I would love to hear your experiences in the comments section below.)

Regardless, I advocate for sharing your diagnosis at least with your inner circle. Starting slowly and with those you trust most gives you a network you can rely on when times get difficult and may even give you the courage to share more publicly (as my network did). If you aren’t comfortable sharing with your real-life family and friends, then I invite you to join my warm and supportive Facebook group. It’s a safe place to share and learn from others going through the same experiences.

Have you shared your diagnosis? What was your experience like? I’d love to hear in the comments below!