We all have tough relationships, and my worst relationship is with my body. My relationship with my body has been terrible these past few years, ever since I developed an autoimmune disease called vasculitis. I hate the way I feel and do not recognize who I am anymore. My physical appearance has remained somewhat the same, but I feel like I am in a dark hole with no way of escaping.
I don’t want to have to be strong anymore. I don’t want every day to be a battle but it is. I don’t want to center my life around my illness, but I have no choice. I don’t want to get out of bed because I feel so sick every single fucking day, but I don’t want this chronic illness to win this fight.
I don’t want to live my life in fear that I might die at any moment.
What I do want is to get better, both physically and emotionally. But most of all, I want to be believed. I don’t know how to convince people that invisible illnesses are just as serious as physical illnesses. I want to understand how hard it is to participate in “normal” activities when I feel like my body is crushing itself. Because that’s exactly what it’s doing. Vasculitis, the disease which impacts what I do every day, every fucking hour, every fucking minute, every fucking second, causes my blood vessels to become so inflamed that my major organs may decide to stop working. Do you understand how terrifying that is?
In my life, I have always tried to see the positive in everything, even the smallest silver lining. But I can’t find a silver lining in being chronically ill. Because this disease forced me to leave a city that I love and start my life over in a city where I have no support. I moved to New York to be regularly seen by an expert that knows my disease well, but I have fallen into a state of deep depression. Turns out the medication I was on for eight months made me develop another disease, called methemoglobinemia. That’s just fucking great.
I am not sure that a life with vasculitis is worth living. I don’t mean to be suicidal. I do want to live, but I don’t want to live the way that I have been living. I just want to be me again, who I was, the happy teenager who wants to get into politics and dismantle the patriarchy. I want to be the person who doesn’t have to take a strict regimen of medication. I want to be the person who loved going on hikes with her dog. When I look in the mirror, I look very similar to how I did three years ago, I just look lost and like I’m on the verge of crying.
At this point, I don’t know if I’m more mentally or chronically ill. All I know is I want to find a place to scream.
I know I’m far from being alone when it comes to people who care for me, and there are plenty of other people who are chronically ill, but I feel alone.
My life with an autoimmune disease feels like being strapped down to a roller coaster that I did not want to go on, and there is no way of getting off. I don’t know what I did to deserve it.
I am looking for hope, but hope is hard to find.