Living With PI
A diagnosis of PI can be a relief, especially if you have been living with it for a long time without knowing what it was. But now it means entering into a new stage of your journey, one that may be unfamiliar. Read on to learn some basic advice and information about living with PI, and to find some additional sources you can turn to for help.
Connect with others who share this experience.
Advocate for Yourself
One of the first steps in managing any chronic condition is to learn to become your own advocate. It's important to work closely with your doctor, but also to be proactive about your health. This can take shape in many ways, including asking questions when you don't understand, knowing your legal rights, and having effective conversations with your healthcare providers.1
By learning as much as you can about PI, you gain a better understanding of what's going on in your body, which can aid you in having effective conversations with family, friends and your healthcare team. Just keep in mind that although you may find a great wealth of information on the Internet, it doesn't mean it is all true. Always check the facts with your physician to be sure.
Although PI may be new to you, it is important to know that you are not alone. Getting support from others who understand what you are going through may help you feel like you are part of a community. There are many places you can turn for support.
MyIgSource can help you better understand your health insurance and the processes involved, from coverage to open enrollment to insurance changes and more. We also offer copay support for Shire Ig products to help ease the financial burden of Ig treatment for eligible patients with PI.
In addition, there are many forums where you can turn for support from others with PI. Remember that while the Internet can be a terrific source for emotional support, it's important to always verify medical advice with your physician first.
Telling Others About PI
PI is not a condition that everyone knows about or understands. And since you may not always appear to be sick, others may have a harder time understanding what is wrong.
Help your family and friends learn more about PI so that they may be better able to support you. Consider explaining PI in simple terms: PI means your immune system is not able to fight off infections easily, so you are more susceptible to illnesses, and those infections may become more severe than they would for others. Remind others that PI is an intrinsic defect of the immune system, and cannot be caught or spread.1
In many cases, your family and friends may want to be supportive, but may not know how. Tell them what your experiences with PI are like, and ask for specific things if you need help. Remind your family and friends that being absent from social events or family gatherings may be a decision made for your health, not one to which they should take personal offense. Ask that they help you avoid germs by alerting you to any possible illnesses they may be experiencing before you come into contact with them.
In many cases, it is your decision whether or not you choose to tell others about your health condition. This is a highly personal decision, and you should do what feels right to you.
When it comes to your employer, disclosing your illness may be the only way to ensure you get the legal protection to which you are entitled. Under federal law, no employer may discriminate against an employee based on a chronic illness.2 Before having a conversation about your PI condition with your employer, it is a good idea to review your legal rights.
Most cases do not legally require you to disclose any disability or chronic illness, and under federal law, no one can discriminate against you because of it.2
Your rights surrounding disclosure, reasonable accommodations, and the equal opportunity you must be afforded may be covered under the Americans with Disabilities Act of 1990 (ADA) – Amended 2008.2
In terms of absences from work to care for your health or the health of a family member, you are protected under the Family and Medical Leave Act (FMLA) of 1993. This law entitles eligible employees up to 12 workweeks of unpaid, job-protected leave in a 12-month period.3
The Immune Deficiency Foundation also offers a Bill of Rights for Patients with Primary Immunodeficiency Disease, which lists medical and insurance rights for patients with PI.
Additional Health Tips
It isn't always easy to have primary immunodeficiency. The good news is that there are treatments that can help you manage PI, and lots of information to help you feel better equipped to take it on.
You are not alone. Learn from others, and connect yourself to even more information by visiting our companion site, ImmuneDisease.com. There, you'll find out about the topics below and more.
References: 1. Blaese RM, Bonilla FA, Stiehm ER, Younger ME, etds. Patient & Family Handbook for Primary Immunodeficiency Diseases. 5th ed. Towson, MD: Immune Deficiency Foundation; 2013. 2. US Department of Justice. Americans with Disabilities Act, 1990, Amended. Washington, DC: US Department of Justice; 2008. 3. US Department of Labor. Family and Medical Leave Act of 1993. Washington, DC: US Department of Labor; 1993.
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Patient Advocate A mother of four children who all have PI, Kristin is here to talk to you.
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