It Can’t Rain All The Time: My Experience With HAE and Mental Health

August 1st 2022 | 5 minute read
Derek Johnson
I was diagnosed with Hereditary Angioedema (HAE) when I was 37 years old. I am now 45 years old and to say the last 8 years has been a whirlwind would be an understatement. Having HAE has created much stress and anxiety for me, which is a tough thing considering that HAE triggers from both.
In the fall of 1994, I was going into my senior year. I was 17 years old and ready to take on life. I was finally one of the kings of the campus. I had a job and a car which meant I could come and go as I pleased, and had money in my pocket. Full of optimism and hope, my year started out as well as I imagined.
It all changed when I started to have pain in my stomach that I could not cover with a smile. It was excruciating. It would literally make me clutch myself and moan. I stopped eating because naturally, I thought it must be something I ate. That did not solve the problem. Next was the doctor. My doctor had no idea what was wrong so I was sent for tests. This led to an upper GI which showed nothing. Then an ultrasound. During the ultrasound, I was told I had swelling in my organs. They said this was probably due to some infection. I was told the infection would clear and the swelling would go away.
The same day, I heard someone say “there’s nothing wrong with that kid, he’s just trying to get out of school.” I have to be honest, that hurt. There is nothing more frustrating than when someone dismisses your pain. I can say that it did make me wonder if I was overplaying it and questioned what my body was telling me. I put it out of my mind as best I could, dealt with the pain, got back to it and graduated ready for a life.

In my 20’s my hands and feet would swell. However, I was way too busy to deal with it. In your 20s, you recover well from injury and have enough energy to bounce back like nothing happened. During this time I was extremely stressed. I had very dark thoughts and would isolate myself when things got too heavy. I never connected my swelling with my stress and missed the signs my body was telling me. When I was 37 and on vacation, my hand swelled up. It seemed different and I couldn’t put it out of my mind. That’s when I went to a specialist to get answers. I was poked prodded and tested, which finally led to my proper diagnosis. I would take pictures of all my attacks to show my doctor. She never looked at them and just made notes on her laptop. That is when I reached out to HAEA and was given a doctor in my area that dealt with HAE. He instantly made my life better.
Questions were answered and strategies were planned. I had read that moodiness was an indicator of an attack. That helped too because I am a moody guy and I now had something to blame for it.
When I was diagnosed, my best friend George had a funny take. We all have those people in our lives that make things better with humor. That’s George for me. He knows that my favorite comic book character is the incredible hulk. So much so that I have a tattoo of the hulk that covers my entire forearm! When George started learning about HAE, he called me and said “So, you have the Hulk disease. You’ve got this thing that when you get stressed or upset, you swell up. Just like the Hulk!” There was no point arguing any further. From that day on, as far as my best friend was concerned, I have the Hulk disease. Instead of him asking if I’m having an attack, he asks if I’m “hulking out.” He always keeps me from getting too upset about something I can’t control.
When I was first diagnosed, I was a trainer for the biggest retailer in the world. My job consisted of teaching classes on anything you can imagine. I loved that job and every second that I was teaching. However, it came with a price. Every morning I would run to the mirror to make sure I looked like myself. I would normally have facial or lip swelling, and I was terrified of it happening in front of my students. That was my life; stressed and anxious all the time. I created a PowerPoint on HAE and would teach it to my colleagues. We would celebrate hae day :-) and use HAE wherever relevant in conversation to spread awareness.

One day, my world changed. My wife said to me, “I don’t know what to say to you, I never know what version of you I’m going to get.” She was right, why were there so many versions of me? This led to a very dark night. I wanted to do better for her. The man in the mirror in front of me was not attractive. I called a help line and was told to seek a professional because I most likely had Bipolar disorder. I followed up with my doctor, and the call center was right. I was diagnosed with bipolar disorder with mood swings.

I mean, you’ve got to be kidding me. First my blood isn’t right, and now my brain. It was too much. But I owed it to my wife and my kids to find a way. I was medicated, but just like HAE, there is no miracle pill. The medicine makes me more aware of my moods. I am always learning to make a change when I notice I’m off.
This is where I need to take a second to acknowledge my wife. She is the perfect mother, wife, and caregiver. She has been my biggest advocate since I was diagnosed with both HAE and Bipolar Disorder. She is right there in the trenches with me and makes sure I always have whatever I need to make it through. She never judges me, just supports me. Every time I show a crack in my armor, she is the one that gets me through and inspires me to remain consistent. I love her with all my heart and soul and thank God every day for bringing her into my life!
My best advice to others with HAE is to hang in there. There are going to be dark days. You may miss a holiday or an event you were looking forward to, but you will absolutely have more good days than bad. It’s easy to remember the bad days. It’s easy to use your illness as an excuse for not meeting your goals. But do your best to change that thinking.

I could write for days based on my experiences. But I want to wrap up this article with where I began in my journey. In 1994, I skipped my prom to go to the movies to see The Crow. I stand by that decision as it became my favorite movie of all time. The prevailing line in that movie was “It can’t rain all the time.” It can’t rain all the time, sooner or later the clouds will part. The sun will come out and clarity will follow. HAE will cause rain. It will make you question things in your body as well as your mind. So, when you’re in a rut and wonder if you’ll ever feel or look normal again, lean on your support group, call me, watch your favorite comedy, look at old pictures, try to do anything that makes you smile. Then open your curtains, look out your window, and think, “It can’t rain all the time.”
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