Living with an Invisible Disability
When I was in undergraduate school, I experienced a host of symptoms that did not have an organic cause. I visited the student clinic many times during the week and, each time, the practitioner told me that is was stress and I needed to relax (I wonder if you have the same reaction I did). This went on for many months until I decided to research “stress” and see what was going on.
In conducting my research, I developed articles for the university newsletter and started to present on my literature reviews. Despite my efforts, the symptoms continued mercilessly. There were days that I experienced so much pain and aches I didn’t know what to do. Then there were days that I was able to tolerate the pain while going about my day.
When I moved to a new city and found a new doctor, I was diagnosed with FMS and CFS. The relief that overcame me was indescribable. It’s a two sided sword to have a label that provides relief and that is stigmatized. While the diagnosis gave me something to work with, it was work. At the time, these were relatively new medical labels describing a set of symptoms that an individual may experience. As a result, there wasn’t much research on how to manage the symptoms. I was astounded to know that I wasn’t the only one experiencing this, which in itself was a relief. I wasn’t alone.
While I tried various medications to help with the symptoms, I did not like the side effects. Since I was training to be a psychologist and with my background in stress management, I chose to apply psychosocial techniques to my experience of pain. I learned what I was able to control and what I wasn’t (the weather for example is a big pain trigger). During my trials and tribulations, there were times I would be on bedrest for two weeks. I would need a doctor’s note, because “You don’t look like anything is wrong with you”. The outside world wasn’t understanding of this invisible condition.
And that was true of some of my colleagues. When we scheduled times to meet, I did what I could to manage my pain; however, there are things outside of my control. When the pain level exceeded my tolerance level, I would need to reschedule meetings, sometimes at the last minute. Some of my colleagues treated me as if I didn’t respect their time. I realized I needed to respect my body. I also learned these are not individuals that share the same meanings of compassion that I do. When one colleague told me that she could be making money during our time that I had to reschedule, it demonstrated to me that connection and learning about the human condition were not as important to her as it was to me. When I’m in pain, I struggle to be fully present.
After 20 years of experiencing this condition, I have a better handle on it. I’m more comfortable with my body’s signals and listening to what is right for me rather than what is right for the other person. Living with an invisible disability means that there are some days that my abilities are influenced by something that is part of my reality. It means that I am intentional in what and how I give myself and my energy to, as I want this invisible disability to be managed so I can live the best I can and show others they may be able to do the same.