It’s Not What it Looks Like

I had always been what my parents described as “a nervous kid.” I was ambitious, competitive, and would worry about everything. I was always a high achiever: top of my class, the “straight A” student, Ivy League bound and driven to always keep climbing higher.

I had such a bright future ahead of me and everything was perfect, right?

In hindsight, I had been dealing with something more serious for much longer than I realized. In middle school, I would find myself starting to sweat profusely for no reason. I would see the world start spinning and my heart would race out of my chest until I would make my way to the bathroom and lay down on the cold floor. I always attributed these episodes to not drinking enough water or being tired.

My mom would tell me to go for a run, or to take a walk for fresh air.

So I did, and sometimes it helped.

In high school, I had my first terrifying panic attack, but once more I just attributed it to being tired. I was standing in a crowded New York City Subway car when my heart started pounding and a feeling of doom washed over me. My vision started blotching out like when you press your fingers against your eyeballs as hard as you can and then release them after 20 seconds. I turned to the the person sitting in front of me and blurted *I need to sit, I’m going to faint.* I must have seemed pitiful because I’ve never seen a New Yorker give up a coveted seat during rush hour. I blacked out momentarily but was still conscious. I could hear everything, but see nothing. Like in movies when the camera pans into the protagonist and the sounds around her get louder and louder until she snaps out of her daydream. At the next stop, I got onto my hands and knees and crawled out of the car onto a bench at the station. I was certain this was how someone feels right before they die – helpless, dark, terrified, and alone. Little did I know that this feeling would happen over and over.

And probably will for the rest of my life.

It wasn’t until I was older that I began to put together the pieces of what was going on inside my mind. At the time, I had trouble finding access to the help I needed so I tried to cope by listening to calming music, reading self help books, and taking deep breaths. For some people this helps, but it didn’t work for me.

When I got to college, life began to unravel. It always started the same way: with sweat, nausea, and a pounding heart.

I would be sitting in class and suddenly my face would start to drip. My heart would drop into my stomach and start beating so hard that I could hear it in my ears. Every single time, I thought to myself that this is what a heart attack must feel like.

I must be dying…..But I wasn’t. What the heck.

I would run out of class and into a bathroom stall where I would subsequently get physically ill. I would call my mom; I would call my boyfriend. And they would come pick me up. Sometimes, I would get stranded all the way across town because I was scared of walking outside and having an episode. Some days I would have trouble getting out of bed – other times I would stay up for days at a time. I was constantly angry at my body for deceiving me in such an awful way.

The episodes would happen suddenly, and randomly until I began dreading leaving my room all together. I would have someone escort me wherever I went. I was scared that one day my episode would be so bad that I would collapse and die. My heart would think it was actually exploding and that would be it. I would wake up in the middle of the night in sweat and vomit out of panic – one night, the campus EMTs had to be called at 3am. I was really dying this time! Nope. I wasn’t.

When I was 19, I was diagnosed with severe panic disorder and generalized anxiety disorder (GAD). Turns out, all these were being fueled by an underlying and more stigmatized disorder categorized by cycles of intense highs and lows.

Back then, I felt so relieved that I finally understood what was going on inside my body. This is great! If we know what’s wrong, we can treat it? Right!? Once again, I was wrong. The brain is a complex system and it takes trial and error to target the right neurotransmitters with treatment. It took years to stabilize my life but since identifying the issue, I have been able to better manage my episodes and deal with the highs and lows in more strategic ways. At first, I felt ashamed that the only thing that could keep me afloat was a cocktail of medication that would mitigate but not eliminate symptoms.

Over time, I slowly began to regain my independence, but I knew the journey was far from over.

I recently had an episode which has prompted to put this all in writing. For the longest time, I had avoided getting my driver’s license for fear that I would have a panic attack while on the road. When I finally got that license, my fear became a reality. As I was driving the dog to training I felt the episode coming on while I was cruising down the freeway. This had never happened in a car before – there was nowhere for me to stop and deal with my symptoms. I was boxed in during rush hour and the panic started to swirl in my stomach. My breathing became labored and Samson got up from his napping spot to look at me with his soft eyes. He rested his head on my lap and I placed a hand on his silky ears. I pulled over and Samson placed himself on my chest just as he has been trained to do and we laid there until I recovered. Then, we went on with our day as if nothing had happened. This never happened again, but life is unpredictable.

The concept of an invisible illness became even clearer to me when I had two hip surgeries…

Suddenly, everyone was coming to my aid. Everyone felt bad for me when I couldn’t partake in activities during recovery. There was something physically wrong with my body that led to two major surgeries and crutches…must be super serious, right? The truth is, I would take hip surgery 50 times over to be cured from the imbalance of chemicals in my brain. To this day, even though my hips lock in place or click when I walk, it is the invisible illness that consumes me so much more. Not a day goes by that my mental health isn’t top of mind – It must always be a priority and I need to be very aware of my limitations. With the help of a wonderful support system, I’ve learned to successfully manage my life.

Unfortunately, society still recognizes the “visible” ailments as so much more serious than the “invisible” ones in our most critical organ: The Brain. The neurotransmitters in our brain control every aspect of how we perceive the world and just like any other part of our body, they don’t always work how they should. The pathways in our brain are complex and just as prone to illness as other parts of our body.

I no longer let my panic attacks consume my days. I get out of bed. I can walk outside by myself. My lows aren’t as low and the highs aren’t as high. I feel so grateful to have been able to obtain the phenomenal medical care I receive every single day. I try not to let my diagnoses take over who I am – I do not mention them much on social media or talk about them often. I do not try to focus on the cocktail of medications that keep me functioning. I do not often share that my dogs are highly trained in behavior interruption, panic response, and have given me my life back in more ways than one. I rarely open up about this journey because I do not want society to make assumptions about me. My illness is a part of me, but it does not define me. Yet, I am often reminded that clinical samples estimate ~50% of individuals with my disorder will attempt suicide at least once in their lives. I am constantly reminded by the media what people believe bipolar disorders should “look” like. But bipolar disorder does not “look” a certain way at all – 1 in 100 people in the United States are affected by bipolar disorder and even within that 1%, the illness can present itself in a multitude of ways.

Historically, the media has played such a large role in perpetuating myths surrounding mental health and disability. These myths just reinforce the way society views mental illness.

All too often, mental health diagnoses are used as adjectives for a temporary state – but really these descriptions do nothing but propel stereotypes.  Bipolar isn’t “moodiness,” OCD isn’t just “attention to detail,” Schizophrenia isn’t an adjective for “crazy.” Stereotypes of violence fail to consider that people with mental illness are two and a half times more likely to be the victims of violence than the perpetrators, not the other way around. People living with mental illness are just as capable of holding down stable jobs, having families, and living a normal life.

Mental illness does not “look” a certain way and it does not discriminate. It recently occurred to me….that perhaps opening up to how “normal” my life appears is just one (of many) ways to shed light on how misunderstood mental illness really is.

I get out of bed, go to work, come home and live my life just like most people. I have a house, I have a wonderful husband and my life is pretty normal – most people don’t ever see that there is anything out of the ordinary. Sometimes I speak a little too fast, seem a little over caffeinated, or lay low for a while but overall there is little indication that anything could be wrong. It is important to remember that visibility is not what defines illness. Over time, I have met so many people who have shared similar experiences and I no longer feel as alone as I used to. I have learned to live a successful and well managed life but this wasn’t always the case. For those struggling, I want you to know that things can get better but first you need to ask for help.

Illness may be a part of you, but it does not have to define you.

5 Replies to “It’s Not What it Looks Like”

  1. I never usually comment on blog posts but I just wanted to say that this post made me tear up (a lot) and just wanted to thank you for sharing your life a little more than usual. We are truly blessed to have the doggos in our lives, they are simply the best animals in the world!

  2. Wow! I’ve never seen anyone describe anxiety so perfectly! I never know what to say when people ask what it’s like because I try to block the memories out of my head and pray that I don’t ever feel that way again. So sorry that you have to deal with this, but so glad to know you’re managing much better now. I read some books on controlling your thoughts and changing how you think which has helped me a lot more than meds and therapy did, so maybe look into that? Best of luck with everything!

  3. As a clinical social worker and someone who has an invisible illness thank you Lea for sharing your story. It’s people like you taking the time to talk about mental health that helps work towards ending the stigma around mental health. So glad you had Sammy with you the other day ❤️

  4. I felt sorry for what you’ve been through. and so glad that you are making big progress.
    However, I really don’t think it is a good idea to drive on the road although getting a driver license is a big milestone for you.
    The uncertainty of panic attack pose a danger for yourself, and even more importantly, for many others on the road. Think about what if you were not able to pull over safely and timely…

    1. first, i want to thank you for being respectful – i think you make a very good point and a very thought provoking comment that would be great to discuss! I think this is a reason why it’s so important for people with mental health illnesses to get help from professionals to prepare for situations like this. This situation did not make me “irrational” as I know how to deal with these episodes so there wasn’t a real risk of the car crashing. With ~8 years of professional help, I know exactly how to deal with the situation (it just caught me off guard that one time as it was the first time it happened on the road…i drive 2 hours a day and it has never happened again). The incident was discussed in great depths with doctors and an action plan was figured out for if it happens again. Someone who does not get help for illnesses could definitely cause a risk so your concern is a reasonable point. 🙂

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