Stories of Hope: An Interview with Joanna Kay
This is part of a series featuring individuals who share their life experiences with mental health issues. Recently, I asked writer and mental health activist Joanna Kay about the personal challenges she has faced and some of the lessons she has learned through her ongoing journey. Here’s our interview:
DS: How did your mental health concerns develop and how did they continue to affect you before you sought treatment?
JK: The more I learn about myself in therapy, the less certain I become of this answer. The short answer is that my mental health issues began when I was about 13 years old. My parents were going through an acrimonious divorce that resulted in my mother and I leaving our home very suddenly.
Things never really settled back into a sort of normal. The financial difficulties of single motherhood kept us moving every few years — sometimes every few months — and my mother’s own distress following the divorce left her unable to help me move through it emotionally.
Psychologically, I lived in a chronically tumultuous state, which supplied the perfect conditions for mental illness to manifest. I began self-harming at 13 and began to restrict my food intake at 14, which began the eating disorder I would ultimately struggle with for the next thirteen years.
I never received formal treatment for these issues, and so they gradually progressed and worsened. No one knew what was going on. I spent my adolescence and early adulthood chronically underweight, and as a result, everyone thought that I was “naturally” thin and ate like a bird. No one saw the distress roiling beneath it all.
As I hinted at above, though, saying that all my problems began at 13 may not be the case. In therapy, I’m starting to realize that some of the traits that gave rise to my mental illnesses have been with me for as long as I can remember. Whether this is because of one (or more) discrete event(s), or because of the complex ways my personality interacts with the world (or a mixture of these) remains unknown.
DS: What was the turning point that led you to decide to seek help and what diagnosis did you receive?
JK: I finally sought help in 2013, six months before I was supposed to get married. That year I was the sickest I’d ever been. I was battling full-blown anorexia and had also developed bulimia as well as a substance use disorder. I made half-hearted efforts to “get better” by going to an outpatient therapist and reading self-help books.
But it wasn’t until November of that year that I finally reached the turning point. I was listening to a webinar with Carolyn Costin (founder of the Monte Nido eating disorder treatment centers) and Shannon Cutts (of MentorConnect). As they were discussing how to take the first steps toward recovery, Shannon said something I’ll never forget: “You don’t have to understand why you got sick or even why you want to get better. You’re not supposed to know how to do it right, or know that it’s going to be worth it. You just have to know you don’t want to live another day or another hour the way you are right now.”
It resonated so deeply that it shook me to the core. I had no idea what “recovery” was or whether I wanted it. I wasn’t even all that certain about what I was in recovery from. But I knew that I was in terrible pain and that I didn’t want to enter my new, married life still shouldering this decade-old burden. The next day I told my therapist I wanted to get help for real, and a week later I had an intake assessment at the Renfrew Center of NYC.
Even then, though, I didn’t realize how sick I was. I started treatment thinking I would spend four to six weeks in their day treatment program and be on my way. Instead, I spent six solid months in treatment.
The diagnoses at the time were anorexia nervosa, depression, and anxiety, along with substance use issues, self-harming tendencies, and a trauma history. Those diagnoses have been fluid over the last couple years. As I get healthier, I’m able to communicate my issues more clearly, which gives us some new “names” to work with — for instance, borderline personality features and a sort of post-traumatic stress disorder.
In the end, though, the diagnoses aren’t hard and fast. They’re more for insurance purposes than anything else. However, I do find it helpful to “name” or “label” my issues, simply because it helps me conceptualize what I need to work on.
DS: What has your treatment consisted of, and what have you found that has worked well for you?
JK: It’s been a long, long road. I have done a lot of formal eating disorder treatment at every level of care, including residential (once), day treatment (twice), and intensive outpatient treatment (three times). Over the last two years, it’s added up to 11 solid months in treatment. Now, I’m working on the outpatient level with a therapist, nutritionist, and psychiatrist.
Getting treatment at an eating disorder facility along with my peers was a critical piece of my treatment. Anorexia was well-entrenched in my brain, so I needed a lot of help to break the behaviors. I especially needed help when it came to weight restoration. It’s not safe for eating disorder patients to remain at critically low weights, but I was too anxious to gain the amount of weight I needed to gain on my own. Being in a safe space while that happened was very important.
One thing that I’ve started trying more recently is yoga therapy. This targets one of the final and most stubborn pieces of eating disorder recovery, which is body image. Yoga helps me to get in touch with and really experience my body. I practice a yoga therapy that is specifically for people with eating disorders, so the teachers are sensitive to possible triggers (for instance, no mirrors!) and help us address things that come up in a way that fits with our recoveries. The practice is full of positive regard, self-love, self-care, and self-acceptance. With every session, I find there is a little less room in me for self-loathing. It is also helping me to develop an exercise regimen that has healthy boundaries.
I’ve also found it very helpful to have pets. I have a cat and a dog who both are very good for both anxiety and depression, especially my dog. She gets me outside and on a schedule, and she’s always there for a hug and some licks if I’m feeling down.
DS: How are things going for you now? What have you learned that has helped you stay positive and healthy?
JK: I’m squarely in what I call the “middle ground” of recovery, which is that space you find yourself in when you get out of treatment but still have a long way to go before reaching “full” recovery. Things are always up and down in the middle ground. Some days I’m thriving and other days I’m just surviving.
But overall, the difference between me in January 2016 and me in November 2013 is incredible. I’m eating regularly, I’m at a healthy weight, I’m in touch with my feelings, I’m speaking my truth, I’m learning more about myself and my passions, and, most important, I’ve built many new relationships. I’m working full time in journalism and I’m in a graduate program for pastoral counseling.
I try to remind myself of that when I need a boost of positivity. It may not feel like I’m improving from one day to the next, but if I zoom out and look at my journey as a whole, it’s amazing!
DS: Tell us a little about your blog and your efforts to advocate for improved mental health care.
JK: My blog began as a way to chronicle my journey through this “middle ground” of recovery. I say on my blog, “This ‘middle ground’ is paved with the hope that full recovery is possible; however, walking it still requires daily focus and commitment. Standing here, one is sharply aware of how grueling yet critical the fight is, because the pain caused by both the eating disorder and recovery itself is still raw.”
This part of recovery is challenging for a host of reasons. For one thing, it’s frustrating to realize just how long this process takes. You are so sick of the eating disorder, yet there are parts of it you’re still struggling to let go, which is a confusing and exasperating tension to be living in. Moreover, many people in your life think that being out of treatment centers means that you’re “all better,” and that, of course, couldn’t be further from the truth.
The blog quickly turned into something much more than documenting my own recovery process. People began writing to me to tell me how relieved they were to find someone else who was feeling like they were. They found hope in the idea that they hadn’t plateaued in their recoveries, but rather that they were walking through the middle ground. I realized it was important to voice this perspective. Moreover, it helped keep me motivated to work hard in my own recovery, since I’d found meaning and purpose in blogging.
My interest in mental health advocacy came about by accident. I didn’t set out to work on mental health reform and helping ensure access to treatment for all. I discovered the need for that kind of work by witnessing the rampant injustices that people with mental illnesses face — myself included.
I was denied over and over again by my insurance company. They dangled the possibility of treatment and hope of recovery in front of me and then snapped it back before I could even get a taste. This happened to nearly every single person I met in treatment. There’s a major problem when it comes to mental health and insurance coverage. No one deserves to die at the hands of their insurance companies. But that’s what is happening.
In addition to doing social media activism (which simply is using social platforms to talk about and raise awareness for these issues), I join the Eating Disorders Coalition twice a year for Lobby Day in Washington, DC, and I volunteer with the National Eating Disorders Association (NEDA) to work on mental health advocacy here in New York. These are great organizations, and it’s easy to get involved with them if anyone is interested!
DS: What would you like to say to encourage others who are still working on their journey of recovery?
JK: I would say to others the same thing I say to myself every day: Don’t stop here.
I get so frustrated with this process on a weekly, if not daily, basis. I keep thinking: When? WHEN will this be over? Why is this taking so long? Is this really as good as it gets? I have to remind myself that this is not as good as it’s going to get, because I’m still in the middle ground. It’s okay to get frustrated and it’s okay to still be struggling, because this is a really hard place to be during recovery. Have faith in the many, many people who swear that full recovery is possible. That is what keeps me going.
Joanna Kay is a New York City writer and mental health activist in recovery from anorexia nervosa. She has written for the National Eating Disorders Association (NEDA), HealthyPlace.com, and other mental health sites. She is also the author of The Middle Ground, a blog that deals with issues facing people who are midway through eating disorder recovery. You can reach her via her blog, Twitter, Facebook, or Instagram.
Thanks so much to Joanna for sharing her story of hope!
Here’s a question: Would you like to share your story of hope? I plan to feature more personal accounts like this from time to time on my blog. If you are interested in sharing your story, please notify me via my contact page. Also, please subscribe to my blog and feel free to follow me on Twitter, “like” my Facebook page, or connect on LinkedIn. Thanks!