The Shame of Chronic Pain
How shame seems to linger in my life despite all of my efforts to thrive as the young woman that I want to be.
As a young adult, I feel the deep, instinctual desire to be doing all the things I want to do, no questions asked. I feel as though I have the right to pursue my dreams, to be an active and healthy woman, to work hard and eat delicious food. I feel like I deserve these things. The reality for me is that sometimes, or in the case of this last month — a lot of the time, I’ve been unable to accomplish a lot of mundane, normal, everyday things. It’s really quite hard to describe limitation to people when they don’t have experience with it. They can try hard to understand the challenge of being unable to do something, but they don’t know how it really feels. They don’t understand how the feeling of helplessness sits within you, aching, radiating, taking over parts of you in ways you never could’ve imaged.
Limitation comes with many feelings, so many confusing and contradicting feelings. When my disease keeps me inside all day, I feel ashamed. I feel frustrated, angry, lazy, neglected/neglectful, sad and lonely. I experience a painful and confusing emotional process because it is chronic, because it will happen again, because I am simply so tired. I end off the process by feeling like an asshole because, in many ways, I am so lucky. I have the ability to move, the ability to talk and feel safe, I have a supportive family, a loving boyfriend, I have it so easy compared to some. I am not confined to a room, or bedridden, I am not addicted to opiates, or heroin, or benzos — I am still ABLE to do a lot of things, just not in the way that I have always pictured myself doing them, and maybe not in the way that everyone around me can do them.
Why is living with pain shameful? It’s shameful for me because I can’t seem to accept it into my life. I spend the day in my living room on my couch and that makes me feel ashamed. I have to tell people close to me that I don’t feel well and that creates shame, every time. I can’t go for a run but I can hobble along, that is shameful. I can’t simply pack up some things and head off on a camping trip with friends, this makes me feel very limited. I have been in a rut for almost a month and I can’t begin to verbalize how ashamed I feel for that. I’ve felt very alone even though I am not, I have been irritable and irrational. I have let a lot of emotions take over that I normally wouldn’t. More than anything I have been scared, scared of never getting out of this situation, scared that I will sabotage a lot of things in my life. It breaks my heart that I can’t be the 25 year old woman that I want to be, but it is not a reason to live a sad and lonely life.. is it?
I want and need to be grateful. I want to appreciate what’s around me during the good and bad times. I have reached a point this month where I can see the damage I’ve done, I can see the lack of communication between my partner and I. All of these things are so valid, and I understand them. I am truly ashamed that I have let myself fall really far into a pit of unhappiness and frustration. Everything I have experienced has led me here, to this day, this moment.
I know that I am hungry for change in my life, change that will start from within. I want to nurture my body and myself, and to do this I need to accept the imperfections in my life, the reality that isn’t all bad, the reality that is mine. Being chronically ill is not simply fixed, it does not come to an end like a beautiful novel. There are chapters — stages of grief, happiness, and determination — there are distressing and isolating moments, but these pass, they always, always pass.