Guest Post: Kendal Phinney’s CVID Story

This post is written by Kendal Phinney.

Having an invisible disability as a college student

I have been sick for as long as I could remember, and throughout the first two years of college I had infections every 2 weeks on the dot. After searching for answers to what was wrong with me for what felt like forever, I found a doctor that listened to me when I asked for autoimmune blood work to be done. Last March on a cloudy afternoon I was completely alone in the immunologist office after a long day of classes when I received the news that I was being diagnosed with CVID. I informed my parents and boyfriend of the news, but I was mostly in shock because I truly did not understand the gravity of this disease. I went back to my dorm and cried in my bed for hours while doing endless google searches about what my life would now be like. The potential complications from CVID and even the painful treatment options made my stomach drop.

Now, almost one year since my diagnosis, I have found more of an acceptance of how to live with an invisible disability while navigating normal struggles that one faces in college and in life. There are days when things are incredibly hard, and I can’t seem to find the light at the end of the tunnel. I am grateful for my strong support system, and I am continuing to work on practicing gratitude and taking life just one day at a time.

Our “Normal” will never be the same as others, but that doesn’t have to be a bad thing

I think that when we take the pressure off ourselves to be the same as others although we are not, it gets easier to navigate life with this disease. It has taken me a very long time to learn that objectively I am not on the exact same path as others in my grade, but that there is a reason that is the case. It can be so hard to feel like you are always playing catch up due to something you have no control over. I didn’t want my life to take this turn, and it is so frustrating to feel like the world is punishing you and holding back from doing what you want. I want to accomplish things at the pace I would like to without ever having to slow down. Every day I work on reminding myself that my timeline is going to look different than others, and there is absolutely nothing wrong with that. I have been slowed down due to things beyond my control, but that doesn’t mean I won’t still meet my goals. The only thing it means is I have to take things at my own pace, simply one day at a time, and I will get where I want to be eventually. 

Catering to what my body needs, and the “Spoon Theory”

One of the hardest things about living with Common Variable Immunodeficiency is that people can not tell I have it simply by looking at me. It is difficult to get side eyes from people when I park in a handicap spot using my disability tag. I may not look like what someone pictures when they think of a “disability,” but that does not take away the physical challenges I have to face due to CVID. I administer my subcutaneous plasma infusions every Friday night, which consists of 6 needles being placed in my thighs. This often results in my legs being incredibly swollen and painful, meaning I can not walk around campus to get where I need to be.

While this feels unfair at times, it is exactly why I have things in place to allow me equal opportunities. I have to listen to what my body needs, and that means accepting that I may need more rest than others. I like to refer to the Spoon Theory when people do not understand what life with an immunodeficiency is like. People with diseases often start at lower energy levels than others due to the fact that their body is working overtime to perform normal functions.  Something that might be a normal task for people without a disease, like taking a shower or going shopping, may be incredibly taxing and exhausting for people with CVID. These things use more “spoons” than they would for regular people, and those with a disease start with less spoons for the day to begin with. Essentially, the energy we start with is lower and more is required to perform tasks that may not affect others. It helps to remind myself that my body is trying its best to keep me going, but that I have to give it rest and kindness for it to be able to do so. Punishing it or forcing it to work too hard is not helpful. We should be proud of ourselves for  getting through life while fighting something that is hidden!