Updated: Jul 17
I am disabled.
I have to ask people to help me carry my bag, I cannot hold a clipboard with my arms flaring up, I cannot type without a stinging feeling in my wrists, I cannot hold my cousins, I cannot play sports, I cannot walk for too long, I cannot have a debate without developing a fever, sometimes I can't even laugh without pain. However, if I had not told you all these things you would have looked at me and thought I was a perfectly healthy, "normal" person who is just extremely lazy. My pain and my chronic conditions are genuine, but inconspicuous; I am invisibly disabled in a society that is conditioned to believe that all disabilities are visible.
In my previous blog posts, I have been sanguine about my fibromyalgia and mental illnesses. However, July is Disability Pride Month and in order to be truly proud of myself and accept my disability, I need to honor the entire truth. Living with an invisible illness is grueling, traumatic, and taints your perception of the world and yourself; it's hard being disabled. And today that's what I want to write about- the hard parts of my experience.
Firstly, I am constantly reminded that people don't understand the seriousness of having an invisible illness. As I have mentioned in my previous blog posts, I developed fibromyalgia the summer after my sophomore year of high school. The friends who I thought would always uplift me started making jokes about how I can't carry a backpack and questioned if I knew what I was doing in terms of caring for my health. Some even suggested that it was all in my head. The teachers who did everything they possibly could to create a comfortable learning environment for their abled students, made me feel like I was an inconvenience for expressing that I couldn't take an exam at the moment because I could not write, even though they received full documentation of my medical conditions. The doctors who I thought had more sympathy than anyone else for the chronically ill, laughed in my face while telling me my pain wouldn't go away. Most people don't make jokes about a person who cannot walk, because they understand it's not a laughing matter.People joke about the invisibly ill because they simply don't understand the severity of our pain. This is not even entirely their fault. From the symbols we use to convey disability to the content taught in health courses, it's no secret to the invisibly ill that even though we make up over 90% of disabled community, we are oftentimes left out of the conversation. Human nature also plays a role. People believe what they see; if they cannot see something, they question its existence unless someone provides them with concrete proof and knowledge that it is indeed there. This is why we urgently need to spread more awareness of invisible illnesses. If you are invisibly ill, I encourage you to be as vocal about your story as you are comfortable with. The more we expose people to our reality, the more they will believe it.
Not only did my illness strain some of my relationships and make me feel isolated, it also changed the way I see fate, God, and made me a million times more afraid. About a year after I developed fibromyalgia, I developed anxiety disorder and mild depression. I developed this intense fear of unexpected bad things happening to me and my loved ones. I feel scared every time I drive my car. Every time I get a cold, I feel worried it will last forever. I get worried every time my parents leave the house and don't come back on time. I feel relieved every time I get into my bed at night because it means I made it through the day. I still believe in God, but I don't know if He/She is benevolent or not, which is a less peaceful feeling than not believing in God at all. The mental toll of having a disability is severe, which is why I encourage everyone living with a disability-whether it's visible or invisible, and especially if it came about later in life- to monitor and take care of their mental health.
Thirdly, sometimes I feel like I lost myself the day I developed my disability. I no longer was the girl I grew up as, I was different. I was so different that I no longer knew who I was. I became confused and frustrated and could not make sense of what had happened to my body and health. As a human development major, I can tell you that developing an illness during adolescence can hurt your sense of self. I had to suddenly embark on three journeys- learning how to live with an illness, graduating high school despite having an illness, and learning how to live with the fact that I am very different from most of my peers and not all of them will understand that.
This post has become very long and my joints are now hurting so I want to leave you all with one message- learn more about invisible disabilities and how they affect people and uplift the invisibly and visibly disabled. If you have a disability, be proud of yourself and your courage and don't be ashamed of your story. If you aren't disabled and know someone with an invisible disability, believe them when they share their story and support them. Don't question them or challenge the validity of their experiences but rather use them to educate yourself and develop more empathy.
Sending you all lots of love.