How I Tried to Explain My Immunodeficiency to My Niece
How do you explain a disease to a child that you don’t even fully understand yourself?
When it comes to illnesses, I’m a bit of a casserole — many illnesses and co-morbidities all baked together to make one medical train wreck. But one of my biggest struggles this past year has been my diagnosis and battle with common variable immune deficiency (CVID), which is defined as “an antibody deficiency that leaves the immune system unable to defend against bacteria and viruses, resulting in recurrent and often severe infections primarily affecting the ears, sinuses and respiratory tract.”
And yes, I’m one of the lucky individuals who got diagnosed with an immune deficiency right before the beginning of a worldwide pandemic.
Since my diagnosis in Jan 2020, between starting treatments, stabilizing my IG numbers (which takes months), having a severe reaction to my IVIG that landed me in the ICU, my numbers once again tanking without treatment and working to find a regime to continue this life-saving treatment, my life has been a never-ending circle of constant, severe infections, complicated by my struggles with this disease.
I’ve watched my 4 and 5 year old nieces (who live with me) be thrown deeper into a world they are way to young to understand. A world I never wanted them to be a part of and feel unmeasurable guilt they have to experience. But when you live with and love someone who is sick, entrance into this medical world is inevitable.
Recently, after a month of nonstop respiratory infections and hospitalizations, my whole house seemed to emotionally be on a razors edge. My first night home from the hospital, my 5-year-old niece Brooklyn was starting to act out and cry way beyond the usual “I don’t want to go to bed” tantrum. So though dizzy and out of breath I made my way to the stairs, sat next to her and asked her what was wrong.
With a hysterical weep she exclaimed, “I don’t know, everything! Why do some foxes live in the forest? And some in the desert? I just don’t know everything!”
She sat by my side and her big brown eyes continued to flood with tears. But the more I talked to her the more I began to understand. This stress wasn’t about “not knowing everything.” The stress was that aunt Megan is sick, and she doesn’t know how to fix it.
Seeing the stress in her little eyes, mixed with the relief that I finally understood why she is so upset, I wrapped my arms tightly around her. Tears filled my eyes and I tried not to hate myself for the stress unwillingly caused her due to my health. Stress I would do anything to take away, all while the threat of me having to do more inpatient antibiotics was looming over all of our heads.
In an attempt to make the burden of the stress she was carrying a bit easier, I turned to her and said “Miss B …. it’s not a big deal. If I leave again it’s just for special medicine.” (She knows IVIG is a special medicine that makes me sick, then helps me feel a lot better).
She gave me a confused smile as I continued my explanation, “See, your body is healthy. So when sickness comes your body knows a special kind of karate that can fight it. My body is bad at karate. It can’t fight sickness by itself. So the doctors have to give it special medicine like IVIG, or antibiotics, and sometimes even antibiotics in the hospital. So it can do that special kind of karate to fight sicknesses. If I go to the hospital it’s not a big deal. It’s just for special medicine to help my body do karate. And once my body gets the help it needs to do that special karate, it will start to feel a lot better.”
With a smile and sincerity in her voice she asked me, “If my body is good at karate, can’t I just teach your body how to do karate?”
With my heart absolutely melting at the sincerity of her response, but wanting to keep things light, I giggled and told her.
“Your body is awesome at karate! When you get sick your body knows how to fight it… and you get better! How cool is that?! But my silly body just can’t learn karate. I have something called CVID. So it’s a little broken, and just can’t fight sicknesses by itself… But that special medicine helps my body so it can fight and do the karate it needs to do. How cool is that?”
She just smiled and smiled and gave me a hug. We talked for a little longer, and with excitement she told me she was now ready for bed, after that silly little explanation and the prayer and plea in my heart that came with it.
It’s like all the wires crossed and for a second, things made sense in her little brain. All of a sudden aunt Megan’s scary sickness wasn’t so scary. She just has to once a month get medication to “help her body to special karate,” so she can fight sicknesses. And if she gets sick, she needs extra medication to help her fight.
It no longer became scary hospital stays that take aunt Megan away. And more of a, “Duh.. aunt Megan just needs the medication that helps her body do karate.”
This moment with my 5-year-old niece made me realize that the sad things in my life, don’t have to be a sad story. And children quite honestly need the truth, but at times not all the fear that comes with it.
And let’s be honest.
It’s much more fun say, “my body sucks at karate,” then “I have a life-threatening immunodeficiency.”
To those with CVID, or children with CVID and or other immune deficiencies, I hope this silly explanation helps you explain a terrifying and complicated disease in a much less complicated way.
Keep fighting! (Even though you suck at karate.)