When I was four or five years old, my brother bit me on my stomach. Most of the time, this wouldn’t be anything special, but the next day while getting me ready for a bath, my mom found a red, puffed up circle. Since it didn’t seem to be hurting me, it was something my family decided to watch to see if it got worse.
That first surprise spot of swelling disappeared within a couple of days, but to me, it changed the trajectory of my life. I then had frequent episodes of swelling in my extremities or face, going to allergist after allergist trying to figure out what was wrong with me. Five years later, I was referred to a Hematologist/Oncologist who just happened to have experience with patients diagnosed with Acquired Angioedema, and he diagnosed me with Hereditary Angioedema (HAE) Type 1.
We now had a name for what I called “the weird swelling thing,” but there were no FDA-approved treatments specifically for HAE. I learned to navigate life with painful, disfiguring swelling. This included missing school days and field trips, learning how to do basic tasks one-handed, and limping in house shoes when my sneakers wouldn’t fit.
The older I got, the more I tried to think ahead and plot out every scenario for upcoming events or plans. I imagined how I would have to explain myself to strangers or deal with the physical challenges of swollen hands or feet. I lost sleep trying to figure out if my sore throat was caused by seasonal allergies or swelling in my airway. I worried about missing out on events like family vacations or even prom.
I didn’t start a preventative treatment until December 2009 – I was 20 years old and had to be intubated because of swelling in my throat on September 25th of that year. Being able to take a medicine that lessened the number of episodes I had was incredible because it felt like I was getting a little more control over how HAE impacted my life.
As much as I benefited from having a medication that addressed the physical needs of HAE, I still struggled with worrying over all the things that could go wrong. There were days when I was physically fine, but I couldn’t get out of bed. I had a hard time handling stress when things did go wrong and cried way more than I would care to admit. I couldn’t get rid of the feeling that I had to constantly be in survival mode.
It took a decade for me to realize, accept, and seek help for my mental health. While working for a non-profit helping survivors of domestic violence, I received a crash course on the impact of traumatic experiences. I learned about the physical effects of chronic stress, like difficulty sleeping, frequent headaches, and weakened immune system, as well as how things like depressive or anxious thoughts are a normal reaction to trauma. Another lesson I had from that training was the importance of changing the way I talk about trauma. There was nothing wrong with me, I was learning to cope with something that happened to me.
I came to realize that only taking HAE medication is the tip of the iceberg. Above the surface, there are the physical effects like the pain from the attack, scars on my chest from having port-a-caths implanted for self-infusing meds, and needing to carry around medicine. But there are many more consequences under the surface, like depression, grief, uncertainty, reminders of trauma, fear, and feeling like a burden. For a long time, I only thought about or dealt with the things above the surface. I learned how to self-infuse my medication and had my go bag of medication for traveling. While my HAE episodes were well managed, my emotional well-being was struggling not to sink.
Diving below the surface to take care of my emotional health has been a work in progress. Part of that work involved talking to my primary care provider, mental health professionals, family and friends. Another part has been learning grounding techniques to calm myself down when I start to get overwhelmed, as well as making a self-care plan. Art, like painting or needlepoint, helps me focus on something when I’m feeling all over the place. Going on a walk and listening to music when I’m feeling cooped up or tense helps me sort my thoughts.
I’m still human and I still have rough days, but knowing I have a loving support system, tools, and resources to help me stay afloat makes a huge difference. Survival mode is a natural response to stress and is bound to come up again at some point, but I don’t have to stay there. Now I feel like I can transition from surviving to thriving.
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