Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand.
The thing is, most of the time we look healthy on the outside. But that doesn’t mean it’s not a burden we have to deal with. And everyone needs a support system. That’s why having friends we feel comfortable sharing this piece of our life with is so helpful.
The Immune Deficiency Foundation (IDF) has put together some tips for teens to help them find the support system they need. The first step is finding friends who will provide encouragement. The second step is actually interacting with them and informing them of our condition (although of course, that’s a decision we don’t have to make).
The IDF makes it clear that not everyone will react to the news of our diagnosis the same way. But they provide ways to prepare us for whatever reaction we get. These include:
- Knowing exactly how we want to explain PI
- Being prepared for the specific questions we might be asked
- Being prepared for the fact that we might not be asked anything at all
For some, our diagnosis won’t phase them in the least. Others will be curious, and others still will be dubious. But, if we surround ourselves with kind individuals to start with, we should receive compassion in return.
That being said, no matter if we tell our friends, and how great their response is, sometimes we just need to talk to someone who understands exactly what we’re going through.
IDF has three different resources that provide a way for teens diagnosed with PI to talk to each other.
- An online discussion forum where we can connect with others who’ve been through our same experiences, learn from their stories, and share our own experiences. It’s called the IDF Common Ground.
- One-on-one teen support for anyone who wants to be contacted by an IDF Teen Council Member. Contact IDF for how to sign up.
- A weekend retreat called the Teen Escape for us have a break from daily life, enjoy fun activities, learn about the latest in PI research, and meet others who have IP. This year there are two locations:
- Dallas Tx, July 15-16
- West Harrison, NY July 29-30
Additionally, IDF holds a national conference and various other retreat opportunities. They understand the importance of support.
And the thing is… it’s out there. We just have to know the right place to look.