living with CVID
Common Variable Immunodeficiency

Living with CVID: How chronic illness changed my outlook on life.

One day, without even knowing it, my whole life changed. I was a freshman in college, 19 years old, and enjoying life in a new state with new friends. From the moment I got an intense ear infection, I had no idea that my body would soon suffer from something bigger.

Common Variable Immunodeficiency (CVID) greatly impairs the immune system and prevents your body from effectively fighting off infections. My body was under attack without a defense.

The CVID diagnosis was both a shock and a relief – it was the beginning of a new, strange, unexpected journey.

For those of you who have been diagnosed with a chronic illness, you can probably remember all too well what that feeling was like. You knew that things were going to change, and it was out of your control.

While chronic illness can be very horrible and debilitating, it has also taught me some insanely valuable lessons and helped me find emotional maturity. Here are some things I’ve learned so far.

outlook on life

I realized how unexpected life can be.

I’ve written about this before, but this concept always boggles my mind. Anything can happen. Literally anything. We have all this plans in our minds that are so set in stone, and they may happen, or they may not.

I’ve spent so many hours worrying about things that never happened. Sometimes I think I know the future, but there is no way to.

Crazy, strange, and unexpected things can happen. Both good and bad. Many times we are totally unprepared. While this can be really scary, it’s also exciting! If you would have told me three years ago that this would be my life, I would be elated! I sometimes imagine if I could sit my old self down and play her a video snippet of my amazing life now and tell her that it’s all going to be okay, in a beautiful, unexpected way.

It can be hard, but it reminds us that we don’t always have control. And we have to be okay with that.

mental health

I have connected with people in a new way.

Even through this blog, I have met so many people that either have CVID or another chronic illness, and it’s amazing to connect with them and share our stories and feelings. I truly feel like I have a great community out there, and I’m excited to continue to foster community in any way that I can.

I feel like those with chronic illness can really understand each other and share expertise from their own experiences, which is really cool. I have noticed that human connection and understanding is so important to have.

human connection

I learned how strong I am.

I used to think that I was so weak. I worried about something horrible happening to me and that I wouldn’t be able to handle it.

But, I have been amazed at my own strength through all of the mentally and physically painful things I have been through. I learned how to use mental strength to calm myself down and rely on myself for comfort, especially when difficult procedures are coming up.

Now, I know that I can do it and that I have been to hell and back. I am so proud of myself. And you should be proud of yourself too.

You have to remind yourself sometimes that you have endured horrible things and you’ve come out the other side. You are strong enough to get through it, and you know that you can rely on yourself.

I am kinder to myself.

This one is still very tough for me. Negative self-talk can be so excruciating. I have spent a lot of time telling myself that I am not good enough or that things are my fault. But I know that my body has been fighting hard, and I am always doing the best I can.

I have to tell myself that I love my body and I love who I am, even on my bad days with CVID. It’s easy to feel like my body has betrayed me, but I know that it’s fighting hard.

When I need to rest, I rest. When I need to say no, I say no. I have to listen to myself and make the choices that are best for me. CVID is not going away, and it is important for me to understand how to live comfortable with the disease.

be kind to yourself

I am learning every day!

I love to learn more about my physical and mental health, and I know that as the years go by, I will gain more life experience with CVID. Here are some articles that I have loved:

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