Defining an Invisible Disease

Tonight I struggled with just feeling generally “not okay”. I think that this is something that people who live with mental illness experience often. It is a reality that some light needs to be shed upon. What it looks like typically, is physical fatigue of some sort, for me this evening it was nausea, also coupled with some sort of anxiety or depression. Common mental illness symptoms exist very much on both physical and emotional planes. The approach I took this evening, was to take an “as needed” pill that targets anxiety. I also took two ibuprofen to take away physical symptoms, and lied down on the bed and proceeded to send my self good thoughts and affirmations, while waiting for the symptoms to settle down. It was moderate discomfort, and really not extreme in any manner. It was manageable discomfort. The point rather, is that this can be a common, almost daily, occurrence for those with mental illness diagnosis. Overall, this significantly affects quality of life. 

For me, it looks like eliminating travel, attending several support groups a week, staying diligent about my pill regime and bedtime, and focusing on diet and exercise closely. Fortunately, I have been blessed enough to manage my finances, and I work for myself. If you count house and yard work as work, I do that as well. I work on my writing when it feels right, and I do not pressure myself toward success. The more I focus on my mental health maintenance, which is truly overall wellness, the more I am able to move toward success with my goals for writing.

For years I struggled with how to describe my common symptoms to friends and family. It can become exhausting to always be saying “I don’t feel well right now,” which is generally vague, or trying to explain that there are both physical and emotional aspects to ones illness. Personally, I shrink from identifying with the word illness anymore. I have been living with mental illness for over two decades, have had several hospitalizations, many episodes, I take eight medications all relating to mental and physical issues caused by the illness, have given up college, pursuing work, and having a family. Illness just feels a little dismissive. For those like me who have taken on serious diagnosis for the majority of their lives, we might benefit from identifying with the word disease. I know I do. I feel it is time to come out of the closet for us chronic survivors. Calling oneself a consumer rather than a patient, or calling what we live with an illness rather than a disease… these terms were originally designed to find a way around the harsh reality of stigma. Now, they only add to the predicament. It is time to call it what it is. It is time we are allowed to take pride in all of the truths that we face while living with mental illness.

Daily struggles of not feeling well, like in the moments I described above, are among the many things that take effort to explain for those living with mental illness. If we cease to pacify the terms of definition, maybe we will be taken more seriously. I have felt shame around friends and family who observe me constantly lying down, or “not feeling well.” It is the subtle rivers that flow through our lives where the stigmas creep in. Sometimes it is the daily realities we live, even if they are moderate, that drag us further into shame. Somehow it can be easier to move on from major crises, at least when one has had repeated episodes over a long period of time. It is the daily misunderstanding, the daily effort to conceal and explain the struggle, that can cause the true harm to one’s identity. Who would have thought?

The truth remains, mental illness, and the disease that it is, is difficult to define, treat, endure, and fully comprehend. It effects every aspect of our lives for those of us afflicted. The world is awakening in awareness. It is important that those of us who live with the disease, seek the definition of our lives. If we continue to hide, we will never truly learn what to say. We will not even know what we are advocating for. True awareness and knowledge of mental illness comes from those with diagnosis. We are the ones who must learn how to express what we live with everyday. Not only does this involve removing shame from even the simplest of circumstances, it also looks like allowing us to comment on how very real and severe mental illness actually is. Describing us with pacified terms to reduce stigma, in the end belittles our actual experience. The good intention is there. Perhaps this is a perfect example of how the road to hell is paved with good intentions.