I AM NOT NOT MY ILLNESS

I have never felt more like myself and less like myself than when I was diagnosed with bipolar disorder. Everything managed to somehow become clear and unclear simultaneously. I knew that all of my abnormal thoughts, my extreme moods, my worrisome behaviors, and my risky actions could now be attributed to this illness. Finally, there was a reason for why I was the way that I was. It was relieving and confirming and grounding, leaving me with a sense of security for finally having an answer to all of the questions I have ever had about myself. After this wave of relief, I was subsequently hit with a wall of insecurity as I was left with a new question: ‘who am I?’ What aspects of myself could be attributed to my disorder and what aspects of myself were just me? I found myself thinking, ‘Is anything just me, or is it all my illness? Am I my illness?’

In order to figure that out, I would have to take a trip down memory lane, to when my sister was diagnosed with brain cancer. It was an event that turned my family’s world upside down. My sister, who had never broken a bone, or had blood drawn, or had ever really even been sick, was thrown into a world of hospital beds, needles, surgeries, medications, regulations, and a completely different perspective on life. But, through her pain and trauma, she also found something else, something that an artist like herself could spend their entire life searching for: inspiration. Since her diagnosis, she has produced the most provocative, groundbreaking, and emotive work I have ever seen. It draws on her experience as someone living with a chronic illness and it opens a new dialogue on the experiences and challenges that individuals from the disabled community face in general.

Her presence in this community exposed me to these experiences and challenges as well. All of a sudden, I was very aware of my able-bodiedness and the privilege I had because of it. I was no longer blind to the subtle, everyday discrimination that people with disabilities, and people with chronic and mental illnesses faced. It was now glaring to me how differently people treated anyone who was not in perfect health. It was also the first time I heard the phrase ‘I am not my illness.’

I am not my illness. It was a concept I found to be commonly promoted amongst these communities. They didn’t want their identity to be defined by their illnesses, so they separated themselves from their illnesses completely. At the time, I was totally on board. Of course, that was because I was looking at the concept from the perspective of an able-bodied person. It wasn’t until I experienced an illness of my own did I see things differently.

My change in perspective didn’t happen overnight though. Like I said, right after my diagnosis I was riddled with questions, insecurities, and uncertainties as to who I was. I kept remembering the mantra ‘I am not my illness, I am not my illness.’ I tried so hard to separate myself from my illness that I would give myself a headache. The real fear, of course, came when I realized I was unable to fully extract myself from my disorder. Then I went to the other extreme of thinking that my entire identity could be attributed to my bipolar disorder. None of my personality existed without my disorder. That thought brought on the worst anxiety attack I’ve had to date. Good times.

Now, I wish I could say I had some big cathartic moment or breakthrough that changed my outlook on my life and my illness, but I didn’t. Instead, I started making lists. I often make lists in times of crisis. Well, at least I did when I was younger. The past few years I turned to sex and drugs as coping mechanisms. Unfortunately for me, I was also diagnosed with a substance abuse disorder and I was trying to get clean so I had to go back to the basics. I remember as a kid, I found that making lists helped me organize and manage my thoughts.

I started by listing things I could absolutely attribute to my illness: hearing voices, manic behavior, etc, etc.. That list went on for awhile. Then I tried to make a list of things I could absolutely attribute to just me, myself, and I. I was stumped at first and started to fall back into that pit of anxiety and then I remembered my saving grace: food. It didn’t matter whether I was in the middle of a manic episode, a depressive episode, or somewhere in between, I was always eating. I loved to eat and no disorder would get in the way; that was all me. From there it got easier…

I’m an avid eater, I have an eyebrow piercing, I love dogs…and warthogs, I used to be very athletic, I am a horrible singer, I’m a fierce feminist and activist, I am told I have a great sense of humor (mostly by my mom), I am also quite lazy when I want to be, I always need to be listening to music when I’m driving, I have an excellent memory, I name my electronics (I’m currently typing on my computer, Jeffrey), I have very little patience with children or babies, I dye my hair crazy colors, and I hate peanut butter.

There’s obviously a whole lot more than just that short paragraph, but it helped me to realize that my identity was not solely defined by my illness. So if I wasn’t completely separate from my illness and I wasn’t completely defined by my illness, did that mean I had traits I could trace back to my own self and to my illness? Only a list could tell. I started making a list of things I could attribute to both myself and my illness: I love sex, I can be very irritable at times, I can have a lot of energy, etc, etc. And that’s when I had the thought: I’m not my illness, but I’m also not not my illness. My illness can be separate from my personality, but it can also overlap it, influence, and at times be one and the same.

Before this realization, I was looking at my illness as needing to fit into a binary. This isn’t a surprise, us humans sure do love our binaries. I guess it’s just easier for us to separate things into two distinct categories rather than comprehend the more complex concept of fluidity, which happens to be the way most things actually are. I saw my illness as being this concept that could either be completely separate from me or the only part of me. Now I see my illness as being interwoven into myself. It intersects with me, sometimes negatively, but sometimes positively.

There are definitely parts of my illness that are horribly exhausting and painful and debilitating. Hearing voices that tell you to kill yourself ain’t exactly a walk in the park. Getting so depressed to the point where the only thing you can do is cry nonstop for days in bed isn’t my idea of a good time. Not being able to control my reactions and my moods can be so infuriating and frustrating and confusing that I just want to scream until I’m red in the face. But each and every one of the negative symptoms I face have also taught me positive things that I might not have learned had I not experienced them.

Hearing voices helps me to remember that you never know what another person might be going through and it’s so important to be kind; a trait which I have found is highly underrated by most people. My depression has taught me that self-love is critical to healing and that taking care of myself is nothing to feel sorry for. My uncontrollable moods have taught me to be patient, not just with myself, but with others. In general, having this disorder has made me a more compassionate and empathetic person. This illness cannot be so easily defined or categorized because it is a part of me, and like every other human being, I am complex and have many layers, just like Shrek or parfait.

Which brings me back to the disabled and chronically/mentally ill communities, many of whom choose to make a distinct separation between them and their illness. It’s no surprise, considering the able-bodied and able-minded communities tend to only see the disability or the illness, and will condense the entire person down to their affliction. Separating the illness from the person is a defense mechanism against this type of ableism; it’s a reminder to able-bodied people that just because a person has an illness or a disorder or a disability doesn’t mean they aren’t human beings who deserve equal treatment and respect. I completely understand the intentions, but I fear the tactic may be doing more harm than good.

Separating the affliction from the person is intended to highlight the fact that a person who has an illness is still a person, but instead it further demonizes the concept of illness in general. Rather than adopting the belief that illnesses and disorders are just a normal part of the human experience for some people, this separation furthers the stigma around illness and in so doing, furthers the stigma around people who have them.

We need to stop talking about illness and disability as if it is this negative entity that we have to avoid or disregard completely. Illness needs to be talked about like it’s a natural part of life, because it is. It’s similar to when people say that they are color blind with regards to race. Well, that’s actually not a good thing; it is invalidating to the person’s racial identity, it equates color to something negative, and it hinders the ability to track racial disparities. Same goes when people they they are not their illness or when people ignore the person’s disability. It invalidates a part of that person’s identity, it equates having an illness to being negative, and it hinders the ability to track disparities between the able-bodied and disabled communities. Illness, just like race, cannot be ignored or swept aside.

I have bipolar disorder. There’s no denying it can really suck sometimes, but it’s a part of me, and it’s a part I can’t ignore or separate from myself. I am not my illness, but I am also not not my illness.


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