I came to NAMI for help over 8 years ago when I was at one of the worse places with my mental health.  My first episode was when I was 24 years old. I was diagnosed with BP disorder at the time. I lived in a state of denial, refusing to fully except my condition, because I was terrified of losing the life that I thought was best for me at the time…partying and living life in the fast lane.  I was a pharma rep too, making a lot of money, and incidentally selling a drug that was for BP Disorder. I was so worried that people would find out about my condition but already my life was coming apart.  I was also suffering from PTSD, and I developed some severe addictions. It was my way of coping with my anxiety over my adolescent trauma, my fear of being ostracized and ridiculed as well as the side effects of my medications.

Fast forward, I stopped the madness by coming to terms with my condition, and by finding support in close family, friends, NAMI and great doctors.  I don’t care anymore about fear, or the stigma or what I could lose. I also had to become honest about one thing…non-compliance was my #1 reason for getting sick in the past…and much of it was due to having symptoms related to Tardive Dyskinesia.

Tardive Dyskinesia, also known as TD, affects over 600,000 people in the US.  It can profoundly impact a person’s way of life.  After I was diagnosed with a mental health condition, I started to experience unusual side effects from the medications I was taking. The first time I recall experiencing a symptom of TD, I was trying to take a walk to try and shake the depression that I was battling with at the time.  I remember how difficult it felt to me to even take a step without feeling this rigidness in my limbs. At first, I thought it was in my head, or it was because I was spending my days in bed, hardly moving. But it was neither. I first noticed that my fingers were hyper-extended, and it felt almost foreign to be in my body. No amount of massaging or shaking my hands made a bit of difference. Because I was battling with my mind’s health, it wasn’t important enough to me to investigate it at the time. I dismissed the unusual symptoms and thought that perhaps the involuntary movements I was experiencing were just the result of having a “nervous breakdown.”  Eventually, it got to a point that other people made comments about me shaking or looking like I had a scowl on my face. Not only did I become self-conscious, but my self-esteem and ability to socialize were impacted.  I took my concerns to several doctors, but all of them minimized my experience.

As the years have passed, I was given countless medicinal cocktails that took TD to a whole new level in my life. Some doctors would tell me that it was nothing compared to the benefits I was getting from being put on a drug to keep my mind healthy. I believed that for a long time, until I finally came across a doctor, over 8 years ago, that finally addressed the antagonism of TD in my life.

I told her that I can’t sleep unless I put my hand under my chin to keep it from shaking me awake. I told her that I have so much pain in both my feet at times that it feels like something was trying to pull my toes out of their joint sockets. I told her that I had woken up with my jaw locked to where I had to call my dentist for help. I shared with her how it has kept me from being fully complaint with my medications for my mental health.

She listened, she was very concerned and was worried that it would cause me to stop taking my medications to stop the shaking and tremors.  She gave me a proper diagnosis, treatment, and care.  And even though TD symptoms can be troubling at times, I made peace with it.   I now feel good in my own body again, my recovery journey continues, and I am able share my mental health story and advocate for awareness, support and education.

Thank God, as I have said many times over, for the medications that ultimately gave me a real chance at recovery, not a life where I lived a life less than what I really deserved and had a right to, coupled with troubling and oftentimes embarrassing contortions in my face, hands, even in the way I walked. With adjustments to my medication and utilizing self-care tools, I have tempered the effects of TD in my body.  It also helps to be conscious of it and work on keeping my body agile by stretching and doing yoga. It really helps me with relaxing and gaining some control over my body to a large degree.  Meditation and mindfulness is also key especially since stress and anxiety can exasperate the symptoms of TD for me.

Each of us has a mental health story or knows someone who lives with a mental health condition.  When it comes to our recovery journey, TD may be a part of that journey.  And if that is the case, more of us need to share and not be silent about it. We need to educate others that this is something over 600,000 could be dealing with as the side effect of their medicines.  We also need to advocate for ourselves and discuss alternative medicines that may be less likely to cause adverse side effects.

TD can wear you out and affect your mental health even more if not addressed. Just like we do all that we can to maintain our mental health, we sometimes have to take action and advocate for support for something that could threaten our compliance and make us resistant to taking medications for our mental health and our overall well-being.

Article written by Athena Kabylafkas | Photo courtesy of Unsplash