6 Ways to Support Someone With Primary Immune Deficiency

I live with primary immune deficiency. Here are some ways you can support a friend who lives with this condition.

1) Learn all you can about primary immune deficiency.

Google, ask questions or go with your friend on a medical visit. Foundations for primary immune deficiency patients such as the Immune Deficiency Foundation or Jeffrey Modell Foundation can also provide information. If you’re a friend or family member, you should at least know the basics about our condition. It’s sad when people I have known for decades still can’t name or describe what I have. Primary immune deficiency diseases can also run in families, information about your loved one’s disease is essential family history to have and could one day be important to your own health as well.

2) Respect the patient’s restrictions.

Just as you shouldn’t force ice cream cake on someone with diabetes, don’t try to force a high-risk situation on an immune patient. And please do not treat the patient like an inconvenience. Primary immune deficiency diseases are not preventable. We did not pick our disease or cause our disease. We hate the rules about our disease as much as you do, but have no choice but to follow them if we want to stay well.

3) Think before you post.

During the coronavirus pandemic, it has become fairly commonplace for people to post or say things like “Don’t worry, only people with weak immune systems will die from COVID-19.” Primary immune deficiency patients exist and we are reading your comments. We want to survive and deserve to survive just as much as you do.

4) Trust our experience.

When part of your body does not work properly, you are forced to learn more about that system than you ever would if you were healthy. Most of the time, we are more than happy to share what our experience has taught us.

5) Sometimes we need you to speak up for us.

It is so hard always being the “bad guy” who has to remind people about the facts of infectious disease or of the reality of our condition. Whenever you can, it is a huge relief to us when someone else does the explaining for us, or when you can help us avoid a stressful or awkward situation altogether.

6) Just listen.

It’s one of the greatest acts of friendship any of us can do. Have the uncomfortable conversations. We can’t escape our own health issues. Face them with us so the heavy weight of this disease is at least sometimes shared. Really be there with us.