From the outside looking in, it is hard for people to understand illnesses or disabilities that you aren’t physically able to see. Those that struggle with depression may not look sad or dreary. Often times they smile and laugh just like everyone else. Those that struggle with anxiety may seem relatively calm on the outside but have a million different voices and thoughts running through their head. They may struggle with panic or anxiety attacks when even their closest friends have no clue.
Whatever it may be, people do not get a full sense of what you may be dealing with because you don’t “look sick” or “look depressed” or “look anxious”. They make assumptions about your identity as a person even though they don’t have the full picture. Maybe by labeling you as lazy when you just can’t muster up the strength to get out of bed and go to class that day. Or they think you are unmotivated because your grades or the quality of your work has suffered as a result of struggles with mental illness.
All in all it doesn’t matter what they may think, they don’t know the full story. Even so, these experiences and judgments have an effect on you. For me, HKPP has become an important part of myself that I cannot change. It has played a large part in shaping me into the person that I am today through unique experiences, both pleasant and unpleasant.
Chronic illness has outlined my life: what I can eat and how often, how early I can wake up, how long I should sleep, how many and what classes I can take, the clothes that I wear, and a plethora of other things. It has taken a toll on my mental health on multiple occasions. On a personal level, I’m really proud of how far I have come. It requires a different kind of strength to live with an invisible disability, lemme tell ya. It’s a part of you that won’t ever go away and will always have to struggle with and I’m learning to accept that.
Because Periodic Paralysis is a huge part of my life and has changed my life so much, I’ve struggled to be separate from chronic illness. Sure, we are one and the same and forever interconnected. But that’s not what I mean. I’m talking about a sense of self. It is hard to figure out who you are when you are constantly labeled by others. I am constantly reminded of it 24/7, mostly by myself. “I can’t do that because of my illness”, “I missed class today because of my illness”, “I can’t do mornings, I have an illness”, “sorry can’t have that, it could make me sick”.
Sometimes its easy to maintain your own identity and sense of self outside of chronic illness. It is easy to forget about the circumstances surrounding your health because it is normal to you. It isn’t always “visible” so you get used to it after a while, it becomes your new normal. But on the other hand, it’s so ingrained into my life that I forget about everything else.
But that’s what makes it tricky sometimes. Most of the time, you can’t even tell that I am disabled and sometimes I genuinely forget. There’s always something that happens or someone who says something that is jarring bringing you back to that strange in-between place. Something as simple as, “what year are you?” or “where were you yesterday?” or “let’s get breakfast in the morning” or “how are you?“. And there I am again. Sandwiched somewhere in-between my identity as a relatively healthy college student and the other part as a ill and often struggling young adult with chronic illness. Struggling again to figure out who I am. And I am both.
I still have to deal with life just like everyone else, and that changes you just as much as it does for everyone else. Maybe even more. It helps you to grow in new ways. All of the “normal” parts of life. Heartbreaks, first loves, stress, growing up, work/college/whatever you do, learning to forgive (or not to forgive), finding your own passion and sense of purpose, traveling, making friends and losing them. I don’t think people realize how much of life there is to deal with outside of chronic illness or other health problems that you have to deal with. I have to grow as a young adult with chronic illness but I also have to grow through the same experiences as everyone else and that can be really hard sometimes. People will still treat you unkindly and hurt you because lets be real, they seriously suck sometimes. You still have your own hobbies and interests, things that you love to do. And sure, you may not be able to do things the way you used to. But maybe you’ll discover something new and find other ways to enjoy old hobbies. Being viewed through one lens overlooks all of the other parts of who you are. Of who I am. Of what I want to do with my life besides just being the mysterious disappearing girl. I’ve come to understand:
I can’t be fully separate from my chronic illness, come to enjoy it even, the way it connects you to this whole other world of people and experiences. Other people’s perception of my invisible disability does not define who I am. I am to be seen for all of the important parts of me. That includes my disability, and my blackness, and my hobbies (new and old), and all of the other parts of me. I am whole and so are you, dear reader.