Life after stigma
It’s been nine years ago this February since I wrote my first op-ed for this newspaper. It was titled “I have bipolar disorder.”
The announcement that I have a mental illness wasn’t to actually talk about myself, but, rather, to stress that this is something that we need to discuss openly in our community. To educate. To dispel misinformation. To support. To break the stigma.
It was a topic that I brought up at that time in my life because it coincided with the creation of Refa’enu, the mental health nonprofit that I founded with the goal of supporting people with mood disorders as well as their families, and educating the public about these disorders and related behavioral health issues. If I was going to start an organization aimed at helping others by bringing these topics to light, I couldn’t hide in the shadows any longer. It was 10 years since I had been accurately diagnosed. It was time, finally, to put my money where my mouth was.
Being “out” was not only about saying those words: I have bipolar disorder. It also meant more transparency, something that might help people who are facing a similar reality. Something that I’ve tried to accomplish through the years. Being open has helped me through some very dark times, as well. And still, I am frustrated. Why? Precisely because people who are not as open are struggling in a way I am not.
Don’t get me wrong. I’m not saying that I don’t struggle. And I certainly do not mean to say that everyone should yell from the rooftops about their mental health conditions or those of their families. I do think, however, that if there was less fear of divulging such information, people might find that they have more access to practical and emotional support from others than they had anticipated. There is stigma, certainly. But I believe that there are many people who are ready and equipped to be there as a support to others — if they only knew that those others needed support.
Is this naïve? Is it wishful thinking? I don’t believe so. The problem is the stigma. The problem is the fear of negative repercussions if others knew the truth. School. Camp. Shidduchim. Employment. Social status. What would happen if they knew? How would they treat me? How would they treat my family?
Let’s look at it from another angle. What would happen if others DIDN’T know about your experiences with mental health and illness? We don’t actually have to ask this question, because we already know the answer: No help. No support. No understanding. No meals at your doorstep to help save you the trouble while you’re dealing with other matters. No flower deliveries or cute little teddy bears holding cute little balloons that say, “Get Well Soon!” No phone calls checking in. Certainly, no heart-to-hearts. Certainly, no shoulders to cry on.
And so, I am frustrated because I know that it doesn’t have to be this way. I can’t promise that everyone who “comes out” about their mental health struggles, or that of their families, will experience the same positive responses that I have experienced. And to be sure, I’ve had some disappointing reactions, as well. It can’t be all roses. But it can get better. It has to get better than this. Doesn’t it? Again, maybe it’s a nice dose of wishful thinking. But what if it’s not?
I can only speak from my own experience, so I’ll be more specific.
The beginning of last summer was a particularly difficult time for me. I was depressed. Then, I was agitated. Again, came the depression. And then I was depressed some more. It wasn’t to the point of needing to go to the hospital, but my mind did start to trail off into dangerous territory that I would get into here but that I can’t get into here because I would have to plaster the beginning of this column with a “trigger warning” — that is, a statement alerting the reader to the fact that it contains potentially distressing material. So, I won’t get into it in detail. Suffice it to say that it was worrisome enough that I knew I needed more help than I was already getting, and fast.
This is when I decided to embrace the motto that I have been preaching for years about maintaining positive mental health when you have a mood disorder: medication, therapy, healthy life choices for physical well-being, and peer support. So, I did something I had done once a few years earlier. I formed a safety net. I took advantage of a moment of clarity and wrote an email to some friends explaining that I needed their help, lest I slip down into that dark hole that I’ve struggled to get out of time and time again. I told them that this help can come in different ways, whether it be a quick hello to check in or a walk around the neighborhood. I knew how fortunate I was to have them in my life, and I said that. I also knew how fortunate I was to have an understanding family.
They came through, each one of them in their own way. Funny memes and sporadic phone calls. Dragging me out for a walk around the block. Calling me every day on their ride home from work. Flowers, just because. Being able to stay with family when my husband was away for more than a week. And, most critically, holding onto my medications and dispensing them every morning, because I didn’t trust having them with me all at once.
Yes, I felt like I was being babied. Yes, I had purposely given up some of my freedom. But I also found relief.
All of these things only happened because I was out and I was upfront about it. I stated it as fact, just as I had years ago when I stated, as fact, that I have bipolar disorder. I told them: “This is what’s happening, and this is what I need from you. Please help me.” It was just enough, along with medication management and therapy, to get me through the rough patch.
Help can come in different forms. I like my friend’s take on what help looks like for her when she’s depressed. Yes, sometimes it might mean having one of those heart-to-hearts that leave you feeling full and understood. But it can also be sitting by your side while you play video games. I mean, literally, sitting next to you while you attempt over and over again to beat the bad guys in the latest version of Mortal Kombat.
Help can be a funny text. One friend and I like to exchange knock-knock jokes. A “Thinking of you” gift. A listening ear. A hug. The most amazing thing about help is that everyone can give it in their own way. And everyone can receive it, so long as others know that they need it. If we can only get past the stigma and ask for that help.
But there it is again. The stigma. The stigma. It always goes back to stigma.
I guess I just wanted to share my point of view on life after stigma. What I’ve learned: Don’t be afraid to ask for help. Don’t be afraid to give specific directions. It takes courage and, yes, a leap of faith, to open up and let people in. To ask for that help and camaraderie. I second-guess myself every single day. And yet I wouldn’t have it any other way.