To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.
What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.
I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.
Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.
I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.
I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.
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