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April is National Primary Immunodeficiency Month, and as it comes to a close, I wanted to reflect on the impact of this disease on my life and the lives of others. I absolutely love that there is a whole month dedicated to raising awareness for this disease.
Every person living with PI has a unique and beautiful story, and I believe that we need to celebrate the strength that it takes to make it through the hard times.
Chronic illness comes with highs and lows. Some days are great, others are fine, and others are horrible. With an impaired immune system, you just never know what is going to strike. There can be moments of fear, anxiety, loneliness, and sadness. But, you know how strong you are and that you can endure whatever storm comes!
Here are some ways to celebrate your strength as someone with primary immunodeficiency (or any chronic illness)!
Spend time with friends or family
Think of one activity that you love, whether that’s going out to dinner, going on a hike, or just watching a movie. Ask some of your loved ones to do that activity with you in celebration of this month!
I used to think that I was a burden upon my friends and family, and that I was always bringing them down with my medical issues. I didn’t like that people had to worry about me and take care of me. But, I have realized over these past few years that I am not a burden, and neither are you! Your support system cares about you so deeply, and those who really love you are going to stick by your site and weather the storm no matter what.
If you don’t feel like you have a support system, just know that there are people with PI living all over the world – and a lot of them connect online! I have found solace in the CVID Facebook Page. I have been able to ask and answer questions, and meet other people my age who have gone through similar experiences! This has shown me that there are people who understand my struggles, and I feel less alone in the world.
Say thank you to your body for fighting this disease
At times, I have felt like my body betrayed me, like this disease was just a horrible curse. I have sat around and wondered “Why me? Why am I so unlucky?”
Many times during college, I watched my friends live healthy and happy lives while I had a cloud over my head that just wouldn’t go away. I wanted to have a different life, and it hurt so much that this disease was probably never going away.
I have struggled with self-love, and I didn’t realize how much I needed to love my body and show gratitude for what it has been through. I have so many abilities, and I have fought through so many things.
Take a minute to say thank you to your body. Go relax and treat yourself to something that makes your body feel good, whether it’s a massage, a hot tub, or meditating. Take a few minutes to feel grateful that your body continues to cooperate you in enduring this disease.
Write down some accomplishments and goals
When I was diagnosed with CVID, I thought my future was stolen. I didn’t know if I would ever have a normal career, and at times I questioned if I was going to graduate college. I wondered about marriage, kids, and paying bills.
With PI, I think it is important to take things day by day, step by step. I want to put my energy into celebrating accomplishments and thinking about realistic goals for myself.
Any accomplishment is a win, and you deserve to feel happy about meeting your goals. Goals give you a sense of joy and pride in what you are doing. There is no goal too small! You set a goal to take a walk every day, get a new job, drink more water, start a new hobby – anything!
Take a minute, grab a pen (or do this on your laptop), and write down some accomplishments you have from this year, and some goals you have for the rest of 2023. Look at your accomplishments and see how amazing you are!
Primary Immunodeficiency can be a difficult disease, but it will not steal my joy.
As I stated in my article about primary immunodeficiency, there are more than 450 kinds of PI, and they can affect your life in so many different ways. The experiences and symptoms vary from person to person.
The things that I have endured with this disease have been very difficult, and I have had some dark moments, as I am sure we all do. There have been days where I wonder how I will deal with this for the rest of my life.
But, I want to live a joyful life. I am allowed to have moments of sadness and anger, but I am also allowed to be happy. Even if my future may be uncertain. I know that the difficult moments are inevitable, but I also know that I can trust myself to face the storms head on. In the meantime, I will be happy and enjoy all of the good moments. After what I have been through, I have learned to cherish things that bring me joy!
The reality is that all we have is today. Who knows what will happen tomorrow. I hope it’s amazing, but I have no idea! All I have is right now, and I want to celebrate myself and what my body has gone through. People with primary immunodeficiency are so strong. No one can take away your strength!
World PI Week is April 22-29
World PI Week is this week, and people are sharing their stories! The movement happens on social media under #MyPIstory. It is a really cool way to continue to raise awareness and hear about people’s experiences with primary immunodeficiency! This website also has some amazing shareable materials to learn more about PI including warning signs and treatment.
If you are living with primary immunodeficiency, I hope you know how strong you are! Take a moment to celebrate yourself 💕
Articles to check out!
IG Living – Living with CVID
Immune Deficiency Foundation – National Primary Immunodeficiency Month