For as long as I can remember, I have felt an immense amount of guilt. It is something that took me a while to figure out- that it was the emotion I was even feeling. It has no logic, but I feel guilty for having a chronic disorder. In certain moments, I feel its insurmountable weight on my chest. I have felt like a burden to those around me, for the trouble or the extra effort they must endure to be my friend, family, acquaintance, etc.
Recently, during these turbulent and confusing times in my life, I have been trying to evaluate why I feel of all the emotions, not anger or sadness, but guilt. As a logical and practical person, that most would say I am, it makes no sense. I did not ask to have for a chronic disorder. I do not play into my disorder as a handicap for attention– frankly the opposite; I often shy away from acknowledging it as anything but “the way things are” and do not ask for help, even when I need it. I have this constant need to prove myself that I can do “it,” whatever “it” is, despite my disorder. Much of my life has been dedicated to trying to make up for that burden I feel like I have caused to the world.
Most of the emotions of living with a chronic disorder come in stages. I have been through my stages of naiveté, denial, anger, empowerment, and confusion, but guilt is probably the most constant. Especially in this generation, living with a disorder or disease, is not about quietly dealing with it, within the confines of your own life, home and mind. In essence, it is because at the end of the day YOU are the one living through it, but now the management and explanation of illness is so much more complex. It involves so many more external influences. There are multiple doctors and other healthcare workers involved, employer issues and workplace rights to deal with, social implications and varying streams of media of what it is “supposed to” look like living a life with a disorder.
Media naturally turns everything into a phenomenon, Facebook and Twitter say everything needs to be documented. Movies, TV and other forms of media always show illness as being the center of life; illness is what gets us jobs, nope just kidding, makes it so we cannot work, leads us to love, oh wait…no, makes us so emotionally damaged that we can never fall in love, etc. It is not OK for anything, especially something as tragic as illness, to just be, not for even a second.It is true that illness affects every part of my life, but it is still an influence, not the basis. So my fight has always been trying to underwhelm the overwhelming, within my own head and others perceptions.
I realized, for so long I was trying to be “Tasia- the chronic disease warrior,” and not just coming to terms with “Tasia- the person.” Who is that person? Do I like her? Am I proud of her? I made up for my guilt by trying to be everyone’s everything—the best family member, the best friend, the best employee, the best student, the best partner, the best person in every and all scenarios. Let me tell you…that is not a possible amount of pressure for one person to handle. But what about being my own everything? I forgot that there is a time and a place when that is all I need to be and that is OK.
Despite my guilt’s profound negative impacts it has on my life, it also is part of my world view. It will never leave me. Guilt, in its own way, stems from a place of love- a sensitivity (yes maybe a hyper-sensitivity) to how my actions affect others. As much as a chronic illness should not define you, it is intrinsically, and inerasably, part of who I am. The guilt associated with it is also so, but I have come to accept that. I am developing way to use that guilt for more productive means. Other than just a restraint to hold me back, I use it as a means to open my eyes things I may not have otherwise seen. It has helped me look at the world the way I would look at myself, knowing what I have been through- with kind, forgiving eyes, often looking past first impressions or surface flaws.