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!
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.
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.
Medication and Supplies - Medication and supplies should be packed where you can easily access them during all times when you are traveling, usually in your carry-on when traveling by air. Ask your immunologist if you should bring antibiotics or other medications in case you become ill. They will be allowed through a Transportation Security Administration (TSA) checkpoint once they have been screened. Keep your medications in their original containers. Your healthcare provider should write a letter of necessity for medications such as immunoglobulin and infusion supplies you bring on a plane. The TSA offers a notification card that can be used by travelers with disabilities or medical conditions. Please note: the TSA Notification Card does not replace a letter of necessity written by your physician. Click here for a sample letter of medical necessity. You can learn more about travel from the TSA website:
- TSA Notification Card: https://www.tsa.gov/sites/default/files/disability_notification_card_508.pdf
- Air Travel with Medications: http://www.tsa.gov/traveler-information/what-expect-if-passenger-needs-medication
- Air Travel with Medical Supplies: https://www.tsa.gov/travel/security-screening/whatcanibring/medical
You can learn more about travel while on treatment from therapy manufacturers and specialty pharmacies:
- Traveling with Infusion Therapy
- Traveling with PI
- Traveling While on Therapy
- Travel made easy with chronic granulomatous disease (CGD)
Emergency Plan - Carry a copy of your In Case of Emergency (ICE) report from the IDF ePHR with you. Ask your immunologist for the name and contact information of a medical facility or immunologist in the area to which you are traveling, or call IDF and we can help.
Nutrition - No one wants to become ill when they are away from home. Consider the following additional precautions to keep you well.
- Drink bottled water.
- Make sure meat, poultry, shellfish and fish is completely cooked.
- Fruits and vegetables should be washed or peeled.
- Rest as much as possible when traveling.
Ask your immunologist if there are other precautions you should take regarding food, beverages or other issues that are important to your care while traveling.
Insurance - Always carry a copy of your insurance card. If you are traveling out of your state or to another country, contact your insurance company regarding coverage. Determine whether you should receive additional coverage. The International Medical Association for Medical Assistance to Travelers provides impartial information to travelers on vaccinations, health risks and food and water safety advice for all countries: http://www.iamat.org/
Immunizations - When traveling outside the U.S., consult with your physician regarding whether you should receive additional immunizations. General information for travelers is available at: http://travel.state.gov/travel/tips/health/health_4971.html