Living with CVID: how primary immunodeficiency can change your life

My CVID (Common Variable Immunodeficiency) diagnosis sent my life into a total tailspin. Before that year, I didn’t consider myself someone who was often sick. I felt fatigued a lot in high school, but I always brushed it off and thought it was normal. Then, when I got repeated ear infections, strep, and sinus infections, I was so confused. I spent weeks at a time being completely miserable.

The diagnosis was such a relief, but it was also terrifying. Nothing would ever be the same as it was before. At this point in my life, I was 19 and if I’m honest, I wasn’t very emotionally mature. I was so angry and sad, and I had a huge chip on my shoulder. I thought no one would understand me and that there was no point in trying to share my pain.

How does CVID change your life?

I know that there are all kinds of stories out there – and I love hearing from people who have fought a similar battle. When someone becomes ill and receives a diagnosis, there is now a new set of things to worry about and plan for. When will I do my weekly infusions? How will I find time to learn how to do them? Will I be able to finish college? What doctor will I go to?

I had to start maturing – very quickly. I needed to juggle my emotions, my plans, my responsibilities, and my relationships. There was this new thing in my life that just needed so much attention. And I couldn’t ignore it. I had to face it head-on.

When college came to a close, I had to decide where I was moving to and what job I was going to get. When I thought about where to move, I needed to think of a city with a lot of medical resources and doctors that specialized in immunology. I wanted to go somewhere warm in hopes that it would help me feel better.

So, I chose to go to San Diego. If it weren’t for my disease, maybe I still would have come here! But, who knows? Even though this illness is a terrible thing, I know that it led me to the path I am on today.

Finding meaning amidst the anxiety and frustration

For years, I have dealt with ups and downs, especially with my lung disease diagnosis and numerous cancer scares. The biopsies and surgeries were the hardest. I was so worried about my future – and if I even had a future.

Questioning my entire future and mortality at a young age was extremely painful. But, I learned some really good lessons along the way. Here are a few:

1. Life is precious and we have to cherish it.
2. Life is unpredictable – anything can happen at any time.
3. Chronic illness comes with a lot of choices. We have to trust our instincts!
4. My disease is a part of my life, but it is not my entire life.
5. I am not dramatic, my feelings are valid.

These are a few little lessons that I have to remember, especially when I start to get really upset about my circumstances. I have to know that life can change at any time, and I want to remember to take in every moment, be grateful, and cherish the people I love. Relationships are so important.

It is important to connect with others with CVID!

I have met a lot of people online that have CVID, and it is so helpful to talk with them about things that we have experienced. It makes me feel less alone and less crazy! If you want to get started, you can learn more about some communities here.

I have joined a couple of Facebook groups, and I have met some other young adults who have had similar experiences to me. It has been awesome!

Check out these articles:

• Do you think you may have CVID? Read about the symptoms here.
• More about plasma treatments: Are they painful? Read about the plasma treatment rundown.
• An interesting article about different ways of living with chronic illness – Living with chronic illness: why some cope and others don’t