Kinsey - NAMI-NYC

When did you first become aware that you had a mental illness?

It was really less about awareness for me and more about acceptance. I can’t remember exactly when I first started experiencing symptoms, but it was during my childhood. I had my first major depressive episode at 22. But I didn’t accept that I had a mental illness until I was 30. And then it took another four years until I was properly diagnosed with Bipolar II.

Did you talk about it with anyone? Who? If no, why not?

When I was first diagnosed, I was given four different diagnoses. It was overwhelming. Fortunately, I was in social work school at the time.  I spoke about it with some of my friends there. I was truly lucky to be in a place with new friends, who already had a greater understanding of mental illness. It took me longer to speak with my family and close friends about it. As a result of my disclosure, I lost a very close friendship. It was quite surprising, considering I’d clearly been living with this illness the entire time that we were friends. But the minute there was a label, she was out.

NAMI-NYC creates a safe place where I can be fully “out” about my illness and be appreciated and valued for that. NAMI-NYC didn’t just give me to tools to deal with my illness – it also gave me the community of people I needed to support me through this incredibly difficult journey.

How did your family respond when you were first diagnosed?

Most were in disbelief. The reality is that I learned over the years how to hide my illness. If my symptoms were bad, I didn’t call anyone, and I cancelled plans. Because I’d been living with it for so long, my family just assumed that was part of my personality. I hid my deep depressions. Honestly, I still do that. But now I can say why. To compound matters for my family, I had two master’s degrees and a successful career. I’m not at all what people think of when they think of mental illness. It was very difficult for some of my family members to accept.

Why did you decide to get involved with NAMI?

I actually got involved with NAMI at the tail end of my first major depressive episode. I was living in San Diego at the time, and having a hard time finding a job in the mental health field. I had quit my job months before as a result of the depression, and wasn’t getting any call backs on my applications. My aunt recommended that I reach out to NAMI. She had been involved in Massachusetts – her brother lives with Schizophrenia, and she needed support. Having no other prospects, I reached out. I started as a volunteer at NAMI San Diego. Eventually, I became their education director. Ironically, I never came to terms with my illness during that time. Which was a real loss for me, and could have saved me a great deal of suffering and struggle over the years. But I have grown to appreciate that acceptance doesn’t happen overnight. There isn’t any one thing/person that can get you to that place.

How has being involved with NAMI made an impact on you?

NAMI-NYC has changed my life. It’s given me the opportunity to accept all parts of myself. I spent so long living in denial, that once I was diagnosed it was overwhelming. It forced me to review my entire life through a new lens. I had to learn how to be me all over again. How to incorporate this part of myself that had always been there, but I’d refused to acknowledge. NAMI-NYC didn’t just give me to tools to deal with my illness – it also gave me the community of people I needed to support me through this incredibly difficult journey. I have connected with people at NAMI-NYC in a way I have never been able to before. They accept me for the entire me, not just the Kinsey I present to the world.

How has being involved with NAMI-NYC made an impact on how you talk about mental health?

NAMI-NYC taught me the language I needed to speak in a way that not only respected my experience, but of all those in my community. It emboldened me to tell my story.  And to do so without shame and guilt.

You are a NAMI teacher, support group facilitator, and the Services Director. What is the question you most often get asked?

I think the most common question is, “What do I do?” How do I navigate this broken system that makes everything so challenging? How do I help my loved one when I can’t get information? How do I get the help I need when it seems like it doesn’t exist?

With every new person that I speak with, I find a new way that the mental health system failed. I’m not saying it’s all bad. But it’s so hard to find the good. It should not be this way. This isn’t just stigma, but the real discrimination that people with mental illness face.

The reality is that there are times I wish I could put the disclosure of my illness back in the bottle. But as soon as I have that thought, I have an rush of anger that I think I have to feel this way. I shouldn’t have to hide my illness…no one should. But that’s also how I know my work isn’t done. It’s the fire that keeps me going.

Why is it important for you to tell your story?

One comment I hear almost every time I share my story is something along the lines of, “If you hadn’t said anything, I would never guess that you had a mental illness.”  I assume people think that’s a compliment. It’s not. But what it does tell me, is that for the first time, this person has seen a ‘different face’ of mental illness. Those uncomfortable moments are the reason I share my story. To change the discourse around what mental illness “looks” like, and who has it. To stop seeing mental illness as an insurmountable disability, but instead as something that many people live with successfully.

How do you feel when you’re telling your story?

Telling my story feels good all the time and every time. It’s such a rare occasion for most people to hear someone talk about living with mental illness that they are usually fully engaged, and ask many questions. It’s also a chance for those in the audience who are living with mental illness to feel connected, and for family members to see what recovery can look like. It’s particularly helpful for behavioral health professionals. Therapeutic boundaries keep them from asking the questions that they can ask me. “What is it about your current therapist/psychiatrist that keeps you coming back for sessions?” It took me a long time to realize why I was always so good at providing behavioral health care—it’s because empathy has been effortless for me. My lived experience has always given me an edge over other professionals in my field.

What role do you think shame plays for people dealing with mental illness?

Shame is a universal experience when it comes to mental illness…for now. Shame for the person who has the illness and shame for the family. The shame and guilt experienced by both parties can be overwhelming. They are powerful emotions. They often overwhelm the logical parts of our brains. That’s why so many people avoid treatment. And why so many families reject their relative’s illness. For now, the hope is that we all eventually get to the logical point. But for too many, that never happens.

What makes NAMI-NYC different than other services you’ve used?

The reality is that therapy and medication can only take you so far. Because mental illness comes with shame, guilt, and subsequent isolation, NAMI-NYC services are invaluable to recovery, acceptance and wellness. Using NAMI-NYC services was the first time that I didn’t feel alone. I know that so many people say this about their first experience with NAMI, but it’s a truth of this organization—NAMI-NYC creates a safe place where I can be fully “out” about my illness, and be appreciated and valued for that.

In groups and classes, you are able to share things you just wouldn’t with people who don’t have an illness. It’s where I learned that so many of us deal with really common issues, regardless of diagnosis. We talk about things such as the challenges of taking medication, disclosing in romantic relationships, as well as the highs and lows of our symptoms. It’s the only place where I can laugh about the downside of my illness, and do so with people who know it all too well.

How has NAMI-NYC changed your life?

NAMI-NYC has dramatically changed my life, for the better. It was with NAMI-NYC that I got my initial diagnosis. It was at NAMI-NYC where I accepted that I had an illness. It was with NAMI-NYC that I accepted that I would most likely have to take medication for the rest of my life. None of these things were easy. Living with mental illness isn’t easy. NAMI-NYC didn’t just make things easier—it made these steps in my life possible.

The support system that I have gained at NAMI-NYC is invaluable. NAMI-NYC is my family of choice.