8 Things My HAE Diagnosis Taught Me

Personally, I have always tried to find the positive, even in the most negative of situations. When I was first diagnosed with hereditary angioedema (HAE), I won't lie to you, I could not see any good in the situation. How could a rare, life-threatening disease have any positives? But after living with the diagnosis for two years, I can finally see some positives that have come from it.

Relating to others

As someone who lived a life with no medical issues, I could not understand or even imagine some of the struggles people with medical issues faced - let alone people with a rare medical issue. It really gave me perspective and allowed me to see that.

Not taking things for granted

One thing about hereditary angioedema specifically is that it is very spontaneous. Many of us don't have actual triggers and our attacks can come seemingly out of nowhere. So we can be feeling fine one second, and the next on our deathbed. I try really hard to not take those times where I feel normal for granted.

Dealing with health insurance

I think this one speaks for itself. But if you don't know, having to fight for approval for life-saving medication is something that so many of us face every year. Between denials and prior authorizations, I don't know what's worse.

Trusting myself and my body

In the beginning, I always doubted anything I felt going on with my body. I thought it was in my head. Because with this disease, sometimes what you are feeling people can't see or some doctors truly just have no idea. But that doesn't change how I'm feeling and what's going on with me.

The importance of community

Having a community that can understand and support you is so important. If I didn’t have some of the people I have in my life, I don't know where I would be in my HAE journey. Between the doctors who have helped me, and my fellow HAE friends, they have changed my life.

Experiences with doctors

Before being diagnosed with HAE, I didn’t have much experience with doctors other than my family doctor. But after being diagnosed with HAE, I have seen and heard some horror stories of the things that have been said and done to us. I’m not saying a doctor has to know everything to be a good doctor. But you need to be willing to say you don't know, and either do some research or find someone else who does.

Becoming stronger

The things I have faced mentally and physically with HAE are things I never thought I would have to go through. Sometimes things are hard. But I can do the hard things. I might have to cry and complain to get through it, but I get through it nonetheless.

Feeling grateful for kind people

All we ever see on the news is all the terrible things going on in the world, which makes it hard to believe that there are good people out there. But through every insurance denial I’ve faced and every swell, I have had people show up for me in ways I didn’t know people still did. I have learned that there are people I know, and strangers that are willing to fight for me and people like me.

Living with a rare disease was not something I knew was going to be a part of my story. But every day, I am being taught new things that I wouldn’t know if it weren’t for my diagnosis. I have met amazing people through my diagnosis. God will work all things for good and I truly believe that, even with my diagnosis.