Why My Husband Does Not Understand Chronic Illness
My husband’s reaction to my reply,”NO”, stunned me to my core. I had answered honestly that I did not want to make to three hour round trip over our local mountain on a single curvy road to oversee a paint vendor. The last couple of weeks we had made several trips to this house. My father’s death last month, recent weekend trips to this house had left my fragile body tired. I had used my limited energy, shopping online deal skills to click away to find the best vendors, materials and a new management company.
Unfortunately, as my, “NO” reply bounced off our family room walls so did my husband’s irritation. He seemed to be in disbelief by my reply as he strongly countered, why I needed to make the car journey with him over the Santa Ana mountains. As he voiced his opinion about how easy it would be for me to just be a passenger as he navigated the small narrow curvy mountain road my mind played back his words. I was hurt and stunned that the person closest to me would or could not understand me or my, “NO” response.
I had explained my reasons for my, “NO” reply. Yet, as I listed our soon to be festive plans, the arrival of our out of town guest, he still did not understand. I proceeded to tell him how the height of narrow mountain slope rapidly consumed my cortisol, the freshly painted house mixed with the old tenant’s poignant dog odor throughout the house would throw my already weakened lungs into infected lungs but he still did not understand.
He just could not understand why I could not happily agree to endure this three hour trip trek. After all, I would just be a passenger. He truly believed the drive up and down the long, narrow elevated single road, highway should be a none issue. He acted as if my reasons for not traveling to this house over the mountain were an unforeseen punishment I desired to place on him. He just did not understand me.
I could not understand how this man who had been my dedicated medical advocate over the past thirteen years just did not understand me. I had no doubt life with a chronic ill partner could exhaust a person’s soul, ruin financial stability and break your heart but I thought he could understand me.
I owned my, “NO”, and I was not going to be pressured by his reasons to change my decision. My desire to hold ground caused our words to explode and raw emotions to be discussed.
It turns out that my husband is like most people who often forget I endure several life threatening rare diseases that brew within my body. Fortunately, as we spoke through our slate mate, he quickly realized the mistake he had made.
He told me that lately I had looked good so he just assumed I felt better. My husband had no idea that recently my days consisted of trying to extinguish the blaze sensation of my ears, ribs and throat. To counteract my pain and try to halt my inflammation I had increased my steroids. Perhaps, not enough. Lately, I have felt as if the disease, Relapsing Polychondritis has gained hold of my throat cartilage and has begun to devour the cartilage around my throat. My voice gives out easily, my shortness of breath is constant reminder and the mind numbing of my body fatigue is my counterpart.
As his explanation of well you look so good spun through my mind, I quickly realized, he does not understand me. However, I questioned how could I expect my husband to understand me if I was not forthcoming about how I felt. My husband knows me, but he is not a mind reader. Even when my days are filled with pain, unbearable fatigue and sadness I had often chosen to remain quiet about how I felt.
The truth is I am frequently tired of being me and sick of being sick. Often, I have felt as if a day with a chronically ill person mimics a sixty minute television show. It is ok the first time you watch the show yet the show becomes dull, boring and you know the story line all too well as the same episode plays over and over. You are able to spurt out the actors’ lines before they speak. I definitely do not enjoy my role in this show.
I realized the show becomes dull, difficult to watch and much less enjoyable as the same episode repeats day after day. So, with of my desired change to the show’s script, I had become an actress. I had learned how to fake healthy. I realized it sounds crazy, but I believed and believe any chronically ill person understands this role. Especially, if you have an invisible disease.
My diseases are serious, but invisible to most people. The multi colored full handful of prescription medication, vitamins and supplements I swallow throughout the day have allowed me to perform on this show. I felt as if I had discovered a new planet as I suddenly realized it was my job to convey to my husband how I felt. Hello!, my mind echoes; my husband does not have a crystal ball nor does he have any idea that a majority of my days are spent in character.
How could I expect my husband to understand my world if I constantly tried to play the role of a healthy person. So, as we sat quietly I tearfully explained to him my frustrations, concerns and feelings. His words reassured me and brought me comfort.
I finally comprehended how he could not understand me or my, “NO”, reply. I realized you cannot expect anyone to understand your situation if they are not given any type of background information. I have taken to play the role of a fictional actress almost daily. I quickly realized, I needed to be more of a non fictional character than an actress who creates a fictional existence. I needed to stop playing a role that does not always exist in my life.
Now, I understand.