Reflecting on the People We Would Never Meet Otherwise

It's a beautiful thing to meet someone who makes you forget your troubles. - author unknown

I have always strived to see the good in every situation. I will admit my health has sometimes made that difficult, to say the least.

I have been reflecting on the people I have met through my health and advocacy journey that I otherwise would not have – the genuine souls that have become so important in my world. People all over the United States I would have never crossed paths with if I never advocated for myself.

My rare disease brought me to the NIH

Going to the National Institutes of Health (NIH) for the first time was intimidating. I wasn't sure what to expect other than I would be there for 5 days of non-stop doctor visits and testing. When I finished on a Friday, I had done 24 appointments and/or tests in those 5 days. I was beyond exhausted.

Every day, my husband and I went back to the hotel and I would just flop on the bed. He made wraps for me and took care of me. I was so tired, and my muscles were sore.

I knew it was worth the cause, though. I was helping others with my illness and myself at the same time. The testing I was doing – and still do yearly – helps NIH learn about what I have and then make medications to help us.

Meeting a special nurse named Dirk

While there, I met Dirk, a vivacious, infectious, affectionate nurse who was so unbelievably caring. One of my major fears when it comes to my illness is mortality. I try not to go down that train of thought in my head. However, being at NIH brought all of my fears to the surface.

The average lifespan for hyper-IgE is 50 to 55, and I'm currently 38. It feels like the mystery of where and when someone passes was taken away from me.  

Dirk was so incredibly helpful to me during my visit to NIH. He walked me to all my appointments to ensure I didn't get lost in the huge building. He got to know my case specifically, asked me questions about my life, and just put me at ease.

Dirk took my fears into account

Dirk himself is such an incredible asset to the hyper-IgE community. He was an endless book of knowledge when it came to my Hyper IgE Syndrome. While I was at the NIH, he answered my incredibly long list of questions.

For other people, their diseases may be more well-known. Mine is considered rare of the rare. So when I found out there were others with my illness there at the same time as me, I wanted to meet them so much.

He told me I couldn't see them. He knew how afraid I was of dying young with my illness and didn't want to scare me with how they were doing. He took my fears into account and let me know that I have a long life to live.

We all need community

I have done so much to change my body's reactions to life, paying more attention to how I feel physically and understanding my limits. Without the support system of people like Dirk, though, all my hard work and education would not be enough.

We all need community to help us succeed, and I have found some astounding people to be in mine.

Who has had an impact on you that you would otherwise never have met if not for your rare disease? Tell us more in the comments below.