Living with Affective Mood Disorder is particularly hard when you don't have a diagnosis and aren't getting the targeted care you need.
November 2018, the letter came in, my eyes lost focus reading, it seemed unreal. The words “APPROVED”, “SSD benefits”, “affective mood disorder”, and “anxiety disorder” jumped out at me. I cried with relief, but also with sadness and shame.
I had applied for Social Security Disability (SSD) once before in the fall of 2013 when I had just started college. Then, I was alone and struggling with everything. Someone told me I may qualify. I didn’t. Not then. But a lot had changed since.
Living with my condition hasn’t been easy. I have lost jobs because it. Would miss shifts or call out sick due to crippling anxiety. I was fired once for “poor customer service skills”. Or, spend parts of shifts hiding away while having emotional outbursts or panic attacks. I’ve been written up, quit, and canceled job interviews because of it.
It affected me in college too. I would miss assignments or hand in late work, struggle to make it to class or to stay for the entirety. Personal interactions problems became more apparent to me there, but I was too anxious to get extra help. It led me into bad relationships too.
I’ve seen a lot of therapists in my life. I don’t see one now and that is partly because of an episode I had with my last one.
It was April of 2018 and I had just suffered three major personal losses in my life. The Zoloft I was on at the time ran out and my doctor was away so I was coming off cold turkey. It was terrible. I found myself in the waiting room at my therapist’s office for our weekly appointment really needing help.
I had my infant son with me and he wanted to nurse, so I let him, like any other time. The secretary slid her window open and asked, “would you like to go into another room to nurse him, so you don’t bother other patients coming to check in?”
What!? I got defensive. “I don’t care if I bother anyone else, that’s their problem, not mine. You do know it is illegal to ask someone to go breastfeed anywhere else, right?” We argued back and forth, then she started gossiping nastily about me with other employees out of view. The waiting room noise cancellers were off so I heard it all. My vision went tunnel like. I couldn’t make out all the words anymore. They were talking about me. About my son. I lost my composure, stormed out, yelling for them to apologize to my therapist for me. I never went back.
Over the years I’ve seen so many therapists I can’t remember a lot of them.
Back in February of 2014, I hurt myself, deliberately.
I was in community college, just dumped from a toxic relationship, my mother had just moved away out of state so I was couch surfing and living out of my car. At the same time, I was also being sexually and verbally harassed by one of my teachers.
It was too much. I wanted release. Clarity. I wanted others to see how much I was suffering inside and that I needed help.
I had no memory of the actual event but I cut myself, deliberately. Nothing that needed stiches, just lots of glue and tape holding the cuts closed. My friends had me rushed to the ER. Suicide had not been my plan, but it was on my mind.
They eventually released me to my mother who came back to get me. With nowhere else to go she and I stayed the night at our old, now-empty home, which was up for sale.
When I was at my lowest, in the Spring 2015, a man who had been my first love from sophomore year of high school came back into my life. With his stability and love I started getting better.
I went on Celexa, which helped lessen my outbursts but made the world fuzzy. I went through a couple of different therapists during that time. Then, I got pregnant.
My OB had advised me to stay on the Celexa while pregnant. I did as I was told. Eventually I gave birth to a healthy son. Then in the Fall of 2017, my Celexa ran out. My therapist, to my surprise, had just retired and my OB would not prescribe the Celexa for me. My son was just three months old. I went into withdrawal. It was hell on me and it turned out to be hell on my son too. I thought that was because of my own postpartum depression, though that was never formally diagnosed.
Then I finally got a primary care doctor who put me on Zoloft. Like the Celexa this also made the world fuzzy, out of focus – distant. But it helped.
I ran out of Zoloft and thought I had refills available but I didn’t. Unfortunately, this happened while my doctor was out of town. His office refused to send in a refill request until he was back. Zoloft has a half-life of 26hrs, so it was well out of my system days later when my doctor was back. My son who was still breastfeeding, went through withdrawals with me this time. It was awful watching him so agitated when he was normally such a happy baby. The doctor had assured me it was safe to take while breastfeeding, but clearly it was not. I was furious. This was the state I was in when I had the incident with the secretary where I stormed out of my doctor’s office.
I swore off pharmaceuticals at that point.
Late in the Spring of 2018, without the benefit of drugs or therapy, I finally got diagnosed.
I’d seen something online that caught my attention. I remember reading and crying, realizing what was wrong with me could have been explained all these years – “emotional dysregulation” (also called “affective mood disorder”). In short, this is the inability to control the intensity or duration of negative emotions like fear, sadness, anxiety or anger. Though I had been told I had emotional dysregulation years earlier, no therapist I ever saw addressed or talked about that. Instead they focused pieces of it.
I now realized why so many therapists hadn’t given me the coping and self-management tools I needed. They weren’t seeing the whole picture. It explained everything.
So, in 2018 I finally decided to try for disability again. I filled out the disability application and was evaluated by the same psychiatrist that Social Security had sent me to in 2013 (when I applied based on just my depression alone and was denied). This time, armed with a formal diagnosis, I got approved.
Nowadays, I manage myself holistically: vitamins, healthy diet, physical therapy exercises, light exercise, and working on how I speak to myself internally. I also have my husband’s help and support and a Facebook group which is a safe place for people like me. Someday I may try another therapist, but my experiences have left me not very confident in its benefits.
My goal now is to get my photography business off the ground so I won’t need SSD anymore. I don’t want to depend on it and I don’t want to struggle with affective mood disorder forever. Somedays are good and some are bad, but that’s okay because every day is a new start.
Melissa is a graduate of NHTI with two Associates Degrees. She is on track to finish her bachelors in professional digital photography in spring 2020 with SNHU. Melissa enjoys most art mediums, but photography is the career path she is focusing on, honing her skills and developing her own business from home while raising her son and taking classes online. Melissa has two chihuahuas and a cat, but always wishes she could take in more because of her passion for animals.