I’m having a brown out today, so to speak. I was unable to attend work today due to my racing heart and dizziness. See, when you are chronically ill you must rethink even the simplest of activities, like driving to work or the ability to walk to your desk. Assuming that a person was once able to perform tasks at will, it is a fair expectation that they will need to adapt in order to adjust to their new “sick” life. Prior to becoming ill, I worked a 40 hour a week job (on my feet), exercised at the gym following my shifts, saw friends, and loved to travel in my spare time. Once I became ill my world became gradually smaller and more isolated, it continues to decrease its size today.
Several weeks ago, a coworker looked me in the eye and stated, “it must be nice to come in whenever you want.” Those words cut me deep because the time I want to come in for work is 20 minutes prior to my shift start time; but some days arriving late is the time that I need to show up. I am fortunate to have an employer that is working with me through this time in my life and allows me to “come in whenever I want” when needed. What people do not see is a sustained heart rate between 120-180 beats per minute for most of the day; in essence, every activity became cardiovascular exercise once I became ill. They are unaware of the temporary blindness I have when I stand, the shortness of breath, the “brainfog,” the migraines, the joint pain and the chest pain that stand in the way of my goals and relationships. In a way, I am glad people are surprised once they find out I’m ill, or the severity of dysautonomia’s impact on my life. It means people think I am capable and I know that is not a judgment that many disabled individuals are on the receiving end of. We truly do not know what another person must endure, even if we are friends or lovers with them as we can never be inside of another person’s mind.
But, I cannot fool myself. In a time where energy has become a luxury to me and I spend most of my free time alone I can’t help but long for my old life. I wonder how my illness might hurt those around me who may think I no longer care for them, and that is why I must decline invitations for company. Those assumptions could not be further from the truth. I am angry with my body for malfunctioning and I wish for a stronger mindset to deal with new challenges that arise daily. Those of us with a chronic illness understand that our energy is basically stored in a bank, and once we use our funds we need to rest. We spend our energy wisely in order to accomplish the tasks that need to be completed, often sacrificing our wants in order to do so. I typically reserve my wants energy for time with my husband, so that we can go places he would like to go to- even if it’s just out to eat.
Learning to live with Dysautonomia is not just an adjustment to increased fluids, sodium, and medication. It is a whole life upheaval. Relationships are strained, self-worth is threatened, and mental illness comorbidity risk increases. The paradigm of treatment needs to shift to a more holistic approach that empowers every patient with tools needed to succeed within their new “normal” so that patients do not feel the need to hide their disorder but rather flourish with capability. The medical field needs to do a better job of helping patients thrive so that they do not decompensate both mentally and physically. There really is no better or more needed time than now.