Hi everyone, my name is Hana 🙂 I wanted to share with you my thoughts on HAE and relationships and why I think it’s important we have that conversation with our partner! 

Let’s agree that It can be scary to open up about HAE to anyone who is not a patient! And it’s even more terrifying talking about it to people who are really important to us. Which is ‘funny’ because when you think about it those should be the people easiest to talk to, right?

But it’s when we think of our closest people, that we ask ourselves “Will they understand? Will they be there for me? Will this scare them away?” And most of all – “Will they accept this part of me?”

I think we need to start by saying that, people who don’t have HAE find it much scarier than us because they don’t know how to react or what to do when an attack comes on. Often time the people around us don’t realize the severity of HAE until they see an acute attack happen, which can be quite a shock! Especially if you know nothing or close to nothing about it.

This is why we, as patients, need to take the time to explain what HAE is and do that  fully, calmly and confidently. It will definitely reassure our partner(s) and help them better understand our situation.

Think about it, you need the people closest to you to know what to expect, how to react and how to support you when you need them the most. But most of all, it’s also important that we help our partner be prepared so that they are not overwhelmed or scared when an attack happens. Don’t forget that HAE has an emotional impact on the people around us as well.

So, what should we remember about HAE and dating? Here are some tips:

  1. Your partner should care for you, love you & support you no matter what. And if you have the slightest doubt in your mind that they won’t or you sense that you don’t get the right support, then re-think if you need that energy in your life.
  2. Be open and confident in yourself! It goes without saying that YOU and only you can accept yourself and love yourself unconditionally! So remember to talk to yourself as you would to someone you love very deeply.
  3.  Value the people who accept you! Always take the time to show you appreciation to the people who stand by you and support you when you need it. A good word goes a long way!
  4. Being honest and talking about HAE will bring you and your partner closer. We can all agree that HAE is a big part in most of our lives, however, it doesn’t have to be the biggest one! Don’t push people away, instead open up and share all your beautiful sides, this will only make you stronger.

You might ask “How do I start this conversation?” or even “What to say?”

Here are some suggestions :

Start by saying a bit about HAE . What is it?  How did you get it?
“HAE stands for Hereditary Angioedema. It is a rare genetic condition that I was born with. However, not every patient is born with it, some develop it later in life.”

What happens when you have an attack?  “HAE causes swelling under the skin because a certain protein in my body is not in balance. This causes tiny blood vessels to push fluid into nearby areas & leads to sudden swelling that can be very painful.”

It might be worth mentioning that: “There is no cure so I will always have HAE, but treatment helps me manage it and our community is making good progress!”

And most of all let you partner know, how can they help you!

“When I have an attack I need you to…” And really try to think what would you need?

And remember you are amazing and HAE is your superpower!

Stay safe everyone,