There are many acute emotions that surround mental health issues and chronic illness. A few that I and my fellow “zeebs” seem to meet are shame and lack of acceptance: ashamed that our bodies are not functioning “normally” and pushing until exhaustion, trying to complete tasks.
Some of us can no longer work due to risk of infection or symptoms, which can lead to feelings of inadequacy. We are at odds with and even lose friends and family who cannot understand or rather refuse to sympathize. How we can look normal and yet be so ill? All of these situations set us up for general anxiety and eventually depression. Over time, this takes it toll, taxing our already weakened immune systems.
I mourn for my body’s loss of functionality. My body. In my earlier life, pre-CVID, I used to exercise. I even ran in races. My husband and I would hike Devil’s Hopyard just for a fun outing. Cleaning the house was just a frustration but a necessary evil, a means to an end. I worked two jobs at one time. I did not appreciate the ease with which my body completed these activities.
My day now consists of planning around what I CAN carry out: cooking dinner, cleaning one room, taking a walk with my dog. I need to rest during and in-between everyday tasks. This is a fact that is still difficult to wrap my mind around. I am learning that I can be more mindful of listening to my body and trying not to consciously beat myself up for what I can and cannot do. I fail at this periodically and look back at my pre-CVID life and have been saddened by the loss. I found that it is a necessary process of mourning for what my life used to be like. The more I try to avoid these feelings of loss, the more bogged down I become by them.
Another difficult part of this disorder is the element of isolation. I have been in the house for the past three days due to exhaustion and pain. “Zeebs” have varying degrees of illness but of course, the overachiever that I am, has a rather impossible case. I said before, in an earlier blog, that the immunologists love to research my blood. I see excitement in their eyes when I donated to further their research. This translates at home to staying indoors much of the time to prevent infections due to exposure to other people. Flashback to flu season this year, when I abused antibac gel and wore a surgical mask in public (embarrassment ensued).
Common Variable Immune Deficiency (CVID) is a step up from SCID, “the boy in the plastic bubble” disorder. Not as severe but still damaging to the psyche. I cringe in public or at a function when someone coughs close to my vicinity. Simple respiratory illnesses that last a week for a “normal” person may mean months of illness, doctor visits, co-pays, testing and medication for me (i.e. general misery). I feel vulnerable, not only to becoming ill but to death itself. It is an understatement to say that people with primary immune issues die often from what they thought was a simple infection that spiraled out of control. The stress of accepting reality is harmful to my body and spirit. I strive to live freely and unencumbered by negative thought patterns.
Few people truly understand what it is to live with this strange and frightening illness, which frankly, is a good thing. In the beginning, I feel that my family and friends saw a “healthy person” and seemed puzzled and frustrated as I struggled to find a diagnosis and the path to better health. This is a common complaint on my CVID support Facebook page: “My friends do not understand that I had to cancel plans.” “My family was frustrated that I cannot get the housework done and dinner cooked.”
“Zebras” not only have to fight to survive illness but also for their new place in their own lives as hindering symptoms develop. Many “zeebs” feel rejected and dejected from the lack of sympathy and support needed. Hearing often, “But you look so normal!” We cringed from these words as we suffer privately, trying not to burden others. I find in my life that patience is crucial to understanding friends and family in my life that cannot yet give the support I need and want.
We are so ill that we expect others to just see our suffering and sympathize wholly, without question. It may be that their lives are so stressful that there is no more energy to share or that they simply did not have the ability in the first place. This is not a reflection or insult to me and my life. I have always been strong, resilient and compassionate. People in my life expect that level of independence even when I am faced with serious illness. The damage resentment can inflict on the immune system is not worth holding on to. Instead, see the situation from a distance. Attempt not to wallow in anger and open the mind to acceptance for others and where they are at in the process. This helps us live more comfortably in our own bodies.