Reflecting on four years with Common Variable Immunodeficiency (CVID)

It’s crazy that it’s been 4 years since I received a diagnosis for my mystery illness. I remember my sick 19-year-old self like it was yesterday.

My body was telling me that something was terribly wrong, and for six months, I wondered what was going on and why this was happening to me. I remember going back and forth in my mind, thinking about what I did to deserve this.

The thing about chronic illness is that it just happens. We don’t know that it’s coming, and it’s easy for our minds to wonder about why.

When I first received the diagnosis, I had to make myself realize that I did nothing to deserve this. For a while, I had so many self-deprecating thoughts. But, my body was already in a physical war, so I didn’t need to add on a mental war.

I wish I could go back and hug my younger self and tell her that it was going to be okay. That I was going to make so many friends, fun memories, and have so many accomplishments. That my disease wasn’t the end of my story. That I would get to move by the ocean and start a career. That I would meet a wonderful guy that would support me through my darkest times.

19-year-old me had no clue what amazing things life had to offer. I look back and I am so beyond proud of myself for not letting the fear and depression stop me. I am proud of myself for seeking help and being vulnerable. I worked hard even when times were tough.

You should be proud of yourself

If you are dealing with chronic illness of any kind, make sure to take a minute and be proud of your accomplishments. You are still here, living life, and doing the best you can. Don’t forget to give yourself grace!

Chronic illness makes life harder. You are breaking down barriers every time you accomplish something, and you need to remember how strong you are.

It’s been a roller coaster

With a condition like CVID, it feels like the battle is never really over. I am at risk for many other diseases and I developed a lung condition (GLILD). I have been tested for lymphoma and leukemia, both of which were mentally and physically painful processes. I have seen my hair fall out, my weight fluctuate, and there have been days where I just don’t feel like myself.

But, with the low points, there are also triumphs. I’ve learned so much about myself. I’ve learned to heal, take care of myself, love myself, and connect with others on a deeper level. I’ve learned about the importance of community and gotten a chance to connect with many other people with PI and other chronic conditions.

When things are good, I feel happy to have some stability. But, I have seen the patterns and I know that I need to prepare myself for anything that may come my way.

That’s why I focus on the controllable variables. After four years, I have gotten to know more and more about CVID and GLILD. I have also noticed what makes my body feel better and how I can continue to make myself comfortable, happy, and healthy.

CVID has not stopped me!

I know it sounds so cheesy to say, “Don’t let your chronic illness stop you!” because it’s just really not that simple. But, I like to adopt this attitude because I truly feel like CVID has not stopped me from living my life. It has presented many hurdles and made life more difficult, but it hasn’t completely taken over. I’ve been able to travel to Europe multiple times, move across the country, go out with friends, meet people, have a career, graduate college, have a good relationship, join work out classes, and more! I just went to Greece with my friends, and while I was facing a few rough symptoms, I was still able to have an amazing time. I’m so grateful.

One year of aubreywithgrace.com

When I began this website, I had been working with many clients with websites of their own, and I thought it would be really interesting to learn web design and create content. I had no idea how much I was going to love doing this! I started to design more on Canva and I really loved writing about CVID, GLILD, SCIg, primary immunodeficiency, chronic illness, and wellness in general.

In the past year, I have connected with numerous other people with CVID as well as other chronic illnesses. I have also been featured on three podcasts. I have had such an amazing time spreading awareness and also encouraging others to donate plasma for patients like me.

I have some big dreams for this website. I bought the domain “aubrey with grace” because my middle name is Grace and I just love the idea of giving yourself grace. No matter who you are or what you are dealing with, you have to remember to treat yourself with kindness, forgive yourself, and give yourself rest. I used to feel so guilty about resting and taking time just for myself. In college, I was always fast-paced and on to the next thing. But, once I took a minute to reflect, I realized I was broken on the inside.

I hope that aubreywithgrace.com can serve as a place for people to learn more about these diseases as well as chronic illness in general. I hope that it is a safe space to reflect and hopefully relate to some of the things I write about. My email and DM’s are always open, I love talking to people!

If you have primary immunodeficiency, or think that you might, visit the Immune Deficiency Foundation!

Their website has a ton of great information and you can connect with others! There are in-person and virtual walks annually as well.

Invisible – A short film about CVID

I made a short film in college about CVID, and I am really happy about how it turned out. It has some facts about the disease and provides a glimpse into what life is like with this condition. If you have a minute, I would love if you checked it out!

I am excited about the future

Chronic illness can often make the future seem bleak, and it is easy to be fearful. But I know that over these last four years I have learned a lot of great coping skills and I am better equipped than I was at the beginning of the journey. Reflecting on the journey has gotten me excited for all of the wonderful things that haven’t even happened yet!