Isolation in illness, my life is not void of this, perplexing, filled with uncertainties and the thought of people leaving as quickly as they have walked into my life. I have not come to the conclusions I have without much thought and experience. My experiences have led me to my views.
Isolation is being ill alone. Even if there is a group of people around you, you feel alone. They can not relate to the pains and trials you face alone. Health privileged people have a hard time grasping the realm of the chronically ill. Health privileged people do not understand the cost of illness, whether financially or mentally.
I respect those in my life with health privileges, but they can not relate to the isolation I feel in my illness. I battle diseases that no one can see; I deal with complications of conditions causing pain within my joints, bones, organs, even my skin. But they can not see it nor relate to it. Someone who lives with a similar illness may very well be able to tell you they are able to relate to your illness.
Thus, I am blogging again as I have in my past, looking for people like me. People who can genuinely say, “I understand how hard it is to keep going.” The reality is, it is hard to continue moving forward. My phone doesn’t ring; there is no anticipation of weekend plans or the hope of being invited to an event. I don’t game with anyone anymore. My boyfriend calls me and we talk, we laugh over a video call or we watch shows. I am blessed to have him in my life, I have finally found my person, the person I know is my forever. The little things he does brings me great joy. Besides my boyfriend calling the other ten to twenty calls I get a week are from doctors. It is not complaining to share your story. I will not be quiet about the reality of the hardships people like me face and say nothing about.
I am tired of being alone in this battle, being quieted by social media, being shoved back down by an ableist society. This kind of treatment is isolating. Why should I be quiet? Why should I not speak up? People can not handle my illnesses because they are ill-equipped, not because I am. I am the one living with diseases and striving for life. While doing so with a boyfriend who supports me, I still long for that group of friends to call my own. A place where I belong, a place where we can lift one another up and have a girls night.
I will expose the cracks in society made by ableist intent. I have started to wonder what happened to humanity, abandon the sick and leave them high and dry; how is this being humane? It is inhumane to leave sick people, and it is an ableist capitalist society fueling this toxic viewpoint. Why do people say things they do not mean? Why do people make it seem like they will stay when they leave? I am blessed and grateful to have my boyfriend and parents check in on me from time to time. However, what about the people who have no one? Who has had their entire family turn their backs on them because they are ill? What about the people who fall through the cracks and give into depression and end their lives? What about us, the disabled, the suffering, the ones that are battling brutal battles alone, in isolation. Why is the world so cold to people? The only explanation I come to is because of ableist intent.
Isolation plagues me when my phone doesn’t ring; I give into the internal ableist voice, telling me I am not good enough and worthless. When this is untrue yet, it is easier to believe when there is no one around you physically to make you feel as though you are worth it. I struggle with thoughts of ending my life; I will not lie; I have tried to end my life in the past. The thoughts linger, and sometimes the pull to end my life becomes something I don’t want to fight anymore; when that happens, I reach out to my therapists, I endure more therapy. I talk through the pains; I work through them. I became stronger because of it. I am strong because I had to be, but I am tired. I do not condone anyone ending their life because of chronic illness. Reach out to the people around you, those who you know you can lean on, and if there is no one, perhaps start therapy. Therapy may not cure the isolation, but it will help you come to a road of healing and understanding and will help you reach out from the depths of your disparity towards some chance at hope. I can’t promise it will be ease, the road is hard, you made it this far, do not quit on you.