Sharing is Caring

Why I share about my disease.

April is Primary Immunodeficiency Awareness Month and it got me thinking about how can we as a community help create more awareness for our disease. I am always struck when people get upset that there is not more awareness for rare diseases like I have such as common variable immunodeficiency. I also hear a lot "oh man if we just had a celebrity with PI, that would be great". That’s not the problem.

The problem is that the average person will never meet a patient like me. I have been living with this disease for 20 years, I cannot expect people to know the intricacies of a disease that I am still learning about myself everyday. I do find that there are opportunities that we the patients can take advantage of to create our own awareness.

I divide awareness opportunities into different buckets, which helps me think about how I share my story, or create my opportunities.

Medical Situations: Immunology is a very specialized field of study. One primary care doctor told me he studied Immunology the same week as the food pyramid, and they spent more time on the food pyramid. More and more doctors are aware of rare diseases, but they rely on us to explain the intricacies of our specific diseases. 

Helpful Tips: First, offer to connect the physician seeing you with the doctor that treats your Primary Immunodeficiency. Secondly, IDF runs a programwhere doctors can consult with a Clinical Immunologist to get questions answered. Finally, ask if you can bring in some awareness materials for their office. 

General Public: This can be tough. Often times when in Public you get just a few minutes to explain. I have an "elevator speech" I give when I need to speak to someone in a particular situation. Essentially if you were riding in an elevator, you have until they get off to explain. I am working on a video to better help explain this concept. Example: 

"Hi, Yeah I try to be careful because I have a Primary Immunodeficiency. It is genetic disease I was born with where my immune system does not function properly and I can get sick easier and more often than the average person. Thank you for understanding." 

Even if they don't understand, most people are like "yeah of course." Keep it short, keep it simple. 

Family/Friends: There are a lot of emotions that come with this one. This is supposed to be the group that stands with you no matter what. My rule of thumb is that I try to explain it, but they may just not get it. It sucks, but that is ok. I have committed to not having toxic relationships in my life, even if that means family and supposed friends. Sometimes it may be that we are sharing too much, and that can be hard to master when we are going through a hard time, but something to take note of with people who do not have the same disease. 

The one's that get it, I treasure them and hold them close. When I need to vent, my wife is there to listen, but she only can understand so much since she doesn’t have the disease, I then call Lisa, my partner in crime in Immune Competence. Find a PI buddy. Encourage family and friends to read more patient experiences. My wife writes for Immune Competence, here is her posts: Marrying into Chronic Illness

Finally I will leave you with something a family member said to me when I had to walk away from some other family members, "you choose every other relationship in your life, but family. Therefore, sometimes you may have to just walk away." More on that here in My Path to a Diagnosis.

Work & School:This is an entirely different story with a lot of sensitivities around it. I purposely left these off. 

Why do we not share more?

It is immensely personal for a lot of people, and often times comes with a lot of emotion. We are human, and it can be frietening to see how people may react to deeply personal experiences. Here is my take, I don’t care what anyone else thinks. I am fierce when it comes to advocating for myself and the PI community. Advocating for the herd of other zebras around me is something I have committed my life and career to doing.

Have I lost friends, family etc along the way, yup. Does it hurt, yup, but I am stronger and better for it. The core group around me now get it. The people who will be around me moving forward get it. If they don’t get it, they won’t be around, period. In addition to that, I have made more friends in the PI community than I could ever hope to have outside of that, that has helped me in so many ways!

I hope this helps some of you looking to start sharing your stories. Are there some generalizations here, absolutely!! It is a complicated, and I get it. You can help other by sharing your story, your struggles and your experience with PI. Your vulnerability is what will help raise awareness, your stories will help bring more understanding. You can make a difference today.

I am a communications and PR professional in my day job. If I can ever be of assistance in helping you share your story, reach out! Colin@imunecompetence.org. This is why I wanted to start Immune Competence. Our platform is open to anyone with a story, let me know how Immune Competence can help!