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When you were a teenager, your social life consisted of hanging out with friends, whether it was going to parties, shopping at the mall or playing video games. Your parents probably knew your friends, had rules about what time you had to be home, and asked you a lot of questions about what was going on. Now you’re an adult. You make decisions and, for the most part, you make the rules. Your choices may be influenced by the fact that you have a primary immunodeficiency (PI) but you can make decisions that will help you live a normal, healthy life.


We all need friends. We need people to hang out with, people who like the same music, who will laugh at our stupid jokes and who will be there in good times and bad. When you were diagnosed with PI your friends were probably a little confused. Some probably said something like, “Well, you don’t look sick!” It may have been difficult explaining your diagnosis to your friends. After all, you probably didn’t really understand it all that well yourself! Some of your friends probably get it and others may not. As you move forward through life, new friends will most likely have the same questions you have encountered before, but it is important to not let PI be the center of your life. It is simply a part of who you are as a person. Your friends should be understanding and supportive. As Walter Winchell said, “A real friend is one who walks in when the rest of the world walks out.” No matter when you were diagnosed you have to figure out how to explain it to others. As you meet new people and make new friends, consider the following:

  • Determine ahead of time just how much information you want to share about your PI.
  • Decide when would be an appropriate time to share this information.
  • Develop strategies to respond to questions and misconceptions.
  • Help your friends understand your disease, and then move on!

Click here for suggestions on how to explain your PI to others. Your friends support you, and they also influence many of your choices. You have probably been in situations where a friend swayed your decision or maybe you witnessed others being pressured into doing something. As a young adult, peer pressure still happens. Hopefully, your friends influence you in a positive way. They understand how your PI affects you and your lifestyle choices. They support you and provide encouragement when you’re making choices that are best for you, even if they do not understand. Click here to visit IDF Friends, a social network exclusively designed for the PI community, and connect with other young adults living with PI in a private discussion forum.

Dating and Relationships

Dating is a big deal for teenagers and young adults. But dating when you are a teenager and dating when you are a young adult are very different. Teenage dating is about having fun and usually not about making a lifetime commitment. As a young adult, the feelings and emotions in dating can go to an entirely different level. Often, people are looking to fall in love and eventually find a life partner. When you meet someone and your relationship gets serious, your partner will want to know everything about you, including your PI. Physically, you should conduct safe sexual practices and communicate with a long-term partner about any potential health risks from infections. You will want to consider when to discuss your disorder with your romantic partner. As you date and develop romantic relationships, you should first be comfortable with your own acceptance of your diagnosis. Be prepared to answer personal questions in a sincere manner. Deciding when to tell a romantic partner about your PI is a personal choice, but it is best not to tell the person too early or too late. When you know that the person is someone you may potentially want to have a long-term relationship with, find the right time to have a discussion. Be prepared to answer questions like:

  • Is your illness contagious?
  • Can you have children?
  • Will your children inherit this disorder?
  • What kind of treatment do you get?

It may have took a lot of time for you to come to terms with your illness. Your partner will need time to process the fact that you have a rare disease. Give them time and space to process. PI does not have to be an obstacle to a loving relationship. Finding the right person means someone who accepts you and loves you for who you are. How will you know if this person accepts the fact that you have a PI? Well, ask yourself the following questions:

  • Does your partner show a sincere interest in your health and your PI? Do they want to learn more and take an active role in helping you with your healthcare?
  • Does your partner treat you like “This problem is your problem and not mine?”
  • Do you feel your partner will be there for you during the hard times when dealing with your PI?
  • Does your partner talk openly and honestly about their feelings as it relates to your PI or do they pretend like it doesn’t exist?

The right person will realize that there is much more to you than your diagnosis. Sure, it is part of who you are, but it’s not the complete picture. The right person will recognize this and accept you for who you are. Many patients with PI are married and have children. Whatever you choose for yourself, PI does not have to be an obstacle to leading a full life. Click here for suggestions on how to explain your PI to others.


Being diagnosed with a PI doesn’t mean you have to stay home. It is best to consult with your physician if you are traveling, especially if you are traveling abroad, but with a bit of planning you will be on your way. Click here to visit IDF's travel page to see a list of considerations when traveling with PI.