I’m going to get real here because not many people will when it comes to dealing with emotional health and CVID. My emotional health has been tumultuous to say the least since my CVID diagnosis. Sure, there’s a lot of books, articles, blog posts, blah, blah, blah…that “discuss” emotions and chronic illness. The authors even write about the emotions I am going to write about today, but their language is “oh so careful.”
Well, folks…unfortunately, my life with CVID thus far has been anything but sunshine, rainbows and unicorns.
CVID and Fear
It is often said that there are only two true human emotions-Love and Fear. The emotions I’m going to discuss today are rooted in fear.
Definition: Fear is a response to impending danger. It is a survival mechanism that is a reaction to some negative stimulus. It may be a mild caution or an extreme phobia. If the fear is trivial, it is called “trifling fear” or if the danger seems formidable it is a “serious fear”.
I spend a lot of time at home because of exhaustion, pain, and anxiety. Thankfully, Common Variable Immune Deficiency (CVID) is not as life-threatening as Severe Combined Immunodeficiency (remember the movie about the boy in the plastic bubble?), yet has still been damaging to my psyche. I cringe in public or at a function when someone coughs or sneezes nearby. A simple cold that lasts a week for a “normal” person may mean months of illness, doctor visits, co-pays, testing and medication for me. I feel so painfully vulnerable to illness and even death itself. I am scared.
Definition: Sadness is necessarily related to a feeling of loss and disadvantage. If this feeling drowns the individual, it may lead to a state of depression. When a person can be observed to be quiet, less energetic and withdrawn to himself it may be inferred that sadness exists. Such an individual usually has a sloping body, stuck out lips and a downcast appearance of the head.
I mourn the loss of my body’s functionality.
The “old” Susan, pre-CVID, was so active. I traveled daily for my sales job and also taught yoga. I rode bikes with my kids and ran with my husband. I enjoyed cleaning my house and tackling outdoor projects.
My day now consists of trying to do at least one of the following: showering, getting dressed, grocery shopping or making dinner (I’m too exhausted after grocery shopping to also make dinner), walking my dog, going to a doctor’s appointment, making phone calls, etc… I need to rest during and in-between EVERY-SINGLE-TASK. I cry and constantly beat myself up for what I cannot do.
Shame is the feeling that there is something basically wrong with you. The feeling of guilt (we’ll get to that one below) is about doing something wrong, whereas shame is about being wrong at the core (Huffingtonpost.com).
My shame stems from feelings of inadequacy. I left my job of almost ten years because I had become so ill I could not get out of bed. My inability to complete the tasks my job required was confusing, frustrating, and scary. Now, even with IVIG infusions, my capabilities are severely limited due to extreme fatigue, joint and muscle pain, side effects from IVIG, brain fog and illness.
Currently, I am unable to work which has lead to feelings of inadequacy and shame. I am at odds with family members who make hurtful comments.
“How can you look normal when we see you and yet be so ill?” they asked.
“We fear we will be helping and supporting you forever,” they said.
“We do not want such drama in our lives right now,” they declared.
“I do not want to be the caretaker of anyone,” she said.
Such comments have caused me even more shame. Over time, these relationships have taken their toll on my emotional health, my ability to have healthy and mindful relationships with my husband and children, and my already struggling immune system.
I feel guilty. I feel guilty that I can’t get my son’s baseball uniform washed and ready for him to wear when needed. I feel guilty that I can’t make dinner for my family some days. I feel guilty that two years ago my little first grader had to get himself dressed, find something to eat for breakfast, and make it on the bus all by himself on days when I was too sick to get out of bed. I feel guilty that my husband is now married to an ill wife that is no doubt a burden.
I feel guilty about our current financial situation which has been threatened by the exorbitant cost of the medical insurance we must carry, medical bills, doctors and procedures not covered by our insurance, prescriptions, supplements that promised to make me feel better, fast food or take out because I’m too ill to make dinner, wigs, etc…
Few people truly understand what it is like to live with this rare and frightening illness. I am fighting to find my new normal as even more hindering symptoms like Thrombophlebitis from my IV infusions develop. I try to suffer in silence so I can be less of a burden on my loved ones.
I feel distant from those who used to be my closest family members. My teenage son resents my constant inabilities. My 10-year-old son told me “You’ve been really stressed out lately mom.” My husband sighs with the exhaustion of bearing the brunt of housekeeping, parenting, cooking, working, etc… My own parents have “ghosted” me.
I know that the lives of my friends and family are also filled with illness and other stressors. I know that they may have no more energy to give or they simply did not have the ability to do so in the first place. I try not to see this as a reflection of their true feelings for me. Until my diagnosis, I was a strong, capable and independent adult. I think my loved ones still expect “Strong Susan” even as I stare down CVID daily.
Definition: Anger is evoked due to injustice, conflict, humiliation, negligence or betrayal. If the anger is active, the individual attacks the target, verbally or physically. If the anger is passive, the person silently sulks and feels tension and hostility.
I realize I am in a downward spiral physically and emotionally. I am supposed to be living an active, healthy life. I am 42 years old, my life only half over, and yet, CVID makes me feel as though I’m eighty years old.
I am angry at my body. I am angry and frustrated at not being able to do all the things I used to do. I so desperately want to, but I simply can’t. I push my body beyond its limits and this only increases my pain and fatigue. It is an endless cycle.
I acknowledge that I take my anger out on others at times.
I am angry at my God.
My poor husband wonders more often than not “what he did wrong this time.”
My mom has “ghosted” me because I express intense anger towards her. Irrationally, I think that she should be able to “fix” me-that she should do anything and everything to help me. Isn’t that what a mother is supposed to do? Doesn’t our society depict a mother’s role as laying down her life for her children? (Listen, there’s no need to comment here-I know my feelings are irrational, but they are my true feelings. That’s the whole point of this article!)
I am utterly disgusted with my feelings, my actions, my body, my self. I don’t want to feel scared, sad, shameful, guilty, misunderstood or angry! I want to feel like how all the books, doctors, blog articles, friends, family and forum comments tell me to feel: hopeful, positive, alive, unstoppable…and there are a few times when I do.
I continue to work through all these negative emotions so please excuse my “mess” while I try to find all the sunshine, rainbows and unicorns I can.
Stay as strong as you can my Zebra friends.