Chronic illness is tough, and that is an understatement. No matter what you suffer with, you feel a sense of discomfort. However, people rarely talk about the psychological burden of being chronically disabled.
Some say that for them, the emotional and mental burden of being chronically ill may actually be just as tough, if not tougher than the physical symptoms themselves, no matter how severe. As not only a “spoonie”, as they say, but an active advocate in the chronic illness community, I decided that I would take a moment to spread some awareness on some of the widespread commonalities that I hear amongst those inflicted, many of which, I relate to as well. Here, you will recognize that the underlying theme is “powerlessness”, especially ingrained in those who became ill at a young age.
One significant theme that is prolific within the community is “the powerlessness of being a patient”. There is a lot that comes along with being a patient, surrounded and under the control of medical professionals who are the only ones who can help you maintain symptoms and perform necessary surgeries and procedures. Medical PTSD is rampant amongst chronic illness patients, and aside from botched surgeries or unplanned events or tragedies, a large contributor comes down to being heard. Unfortunately, staff can be invalidating, and if you are a long-term, especially complex chronic illness patient, things like addiction accusations for being on life-saving pain medication, being continually dismissed and told your problems aren’t real (medical gaslighting), and being scolded or even yelled at or mocked by doctors or nurses who possess more ego than empathy, can really take a significant toll on the psyche. We become programmed not to trust, and when you feel unable to trust the only people who can help you, give you quality of life or potentially even save your life, what is left to do? You have no choice but to keep diving into that deep end, wondering each and every time if you are going to sink or swim. It is a trauma that forms that has to constantly be relived- literally- with every doctor’s appointment and every hospital visit.
Others feel powerless as they cannot work, work to the capacity they desire, or attain that career that they possess so much passion for. A chronic illness patient may end up feeling behind, or stuck in life. To top it off, they may have those around them telling them that they could be trying harder, that they are lazy, or that they are faking being ill. When you are constantly the one who has to be taken care of, you may feel useless, worthless, like you lack a sense of any power- power over your own body, and over the cards you have been dealt. When medical personnel are constantly taking care of you, in a position of that power you wish you had in your life, it is not uncommon to wish the roles were reversed, or that you were one of them. This is especially prominent in the minds of those who have become significantly medically savvy throughout the course of their own long and treacherous journey. You have the knowledge, you know how to advocate, and to backtrack to my previous point: you still aren’t listened to. Whether it be in the medical profession or an entirely different career path, wishing that you finally had a role where you felt not only a sense of internal power, but achievement, is very common as well as totally understandable.
Lastly, many people who suffer from chronic illness that hinders their social life may feel powerless that they have no choice but to back out on plans. Many even refuse to make plans and go into “play by ear” mode as they never know how they are going to feel come the day of.
We feel powerless over our own bodies.
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