Recently diagnosed with Common Variable Immunodeficiency (CVID)? Here’s my advice for the beginning of the journey

So, you’ve just received the diagnosis. Maybe you’ve been sick for years and years with no end, or this has been a recent whirlwind in your life. Either way, the following months after being diagnosed with a disease like CVID can be extremely difficult and anxiety-inducing.

Remember to take a breath and think about how strong and amazing you are. This is the beginning of the journey, and you will become more comfortable with time!

Facing the initial shock

One of the worst parts for me was the shock of my diagnosis. I had never heard of this disease, and I could hardly grasp what everything meant. When I heard that I was going to have to rely on self-administering donated plasma, I was very overwhelmed.

I didn’t want to have disease that made me “different” or held me back. I wanted to live a good, happy life and not feel the weight of a permanent illness.

Here’s my advice: It’s normal to be upset and confused. You need to give yourself time to cry, tell your friends and family, and be angry. When you let yourself feel those uncomfortable feelings, it will help you down the line. Trust that things will get better, and you become more comfortable with this disease.

Luckily, the shock wears off! After a few weeks, I was already feeling a lot better.

Learning more information

I’m sure you have heard this time and time again, but going to a search engine and typing in the name of your disease can easily freak you out. When I first researched “CVID” I saw the words “life expectancy” and nearly started crying. I didn’t think that my life would be shortened by this disease, but I got really freaked out.

I think that learning more information is very important, but it takes some time. I would suggest asking your doctor all of your burning questions. I have done some research online myself, but I have to remember to proceed with caution. CVID can be a different experience for each person, so not everything I read may apply to me specifically.

My advice is to proceed with caution when learning information online, but still seek out answers to your questions and eventually develop a solid understanding of the disease. This also comes with time, so you are not expected to know everything right away.

Starting treatment

When you get diagnosed with CVID, you will be told what your treatment plan is. I was told that I was going to do Subcutaneous Immunoglobulin (SCIg) Therapy. I knew nothing about this, and I anxiously waited for my first infusion. I was so nervous and had no idea what to expect.

The first treatment was the hardest. I felt very sore and tired after. I was learning all of these new things, and I had a specific set of steps that I needed to master in order to give myself these weekly infusions.

Starting treatment can be bittersweet because you know that it will help you feel better, but it is still an unexpected life change. I didn’t love the idea that I had to rely on something just to live a normal life.

It felt weird, like I didn’t totally recognize myself with this disease. I wasn’t used to having this as part of my identity.

Fortunately, SCIg helped me feel better and get my life back. I advise everyone to focus on the fact that treatment helps you get better. It sounds very simple and easy, but at times I would forget what I was really doing it for. I was going through the motions, and I often lost sight of how this treatment has given me freedom from constant illness. Although it can still be hard sometimes, I know that without it, my quality of life would be so much worse.

It gets better!

No matter what point in life you’re at, a CVID diagnosis can be so scary. In the beginning, it feels like there is so much unknown.

I don’t want to sound cheesy, but just know that it gets better. After almost 4 years, it has been a complete roller coaster, but I am able to live a full life and enjoy some amazing things.

If I need to cry and be upset, I allow myself to do that. This disease is not fun. I have seen some really dark days and dealt with a lot of uncertainty.

But, I have become a lot more comfortable with how CVID fits into my life. SCIg has become so much easier, and I listen to what my body needs.

Give yourself grace and trust the journey!

More from Aubrey Grace

What are the Symptoms of Common Variable Immunodeficiency (CVID)?

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