Before I received my hereditary angioedema diagnosis, I consulted with several doctors about the mysterious pain I’d spontaneously experience on occasion. But they could never determine what was wrong with me. Still, before each visit with a new doctor, I let myself hope that I’d finally leave with answers.
This time was no different.
After initially consulting with the doctor who was given my case, I was excited. I felt comfortable with him, and he promised to help me manage the pain that was sure to come after my upcoming exploratory surgery, which was scheduled to hopefully help the doctors discover the source of all the pain I’d been experiencing. Surgeries had been traumatic and dangerous for me in the past, but he assured me this time would be different. This time, he told me, we would have answers!
The morning of the surgery, I felt ready. However, the second I woke up in recovery, I knew something was wrong. Pain ripped through my abdomen. I was swelling violently and could hardly breathe. Hours later, after some of the swelling had subsided, I felt a flash of relief when the doctor entered my room, but when I heard the words “There’s nothing wrong with you; it’s all in your head,” my relief turned to fear. I started to cry, and as the nurses helped me out of my bed to walk, everything faded to black as I fainted.
I was released from the hospital the following morning, with nothing but a referral to a psychiatrist. I was devastated. My family and I had been so sure we were going to find the answers, and the trip had only served to make me feel hopeless.
But as crushing as it was for me, my family refused to let me give up. Together, we picked up the pieces and moved forward. Eventually, I met with a doctor who had the answers I needed, which would start me on the path to finding a wonderful healthcare team and treatment for my HAE. In my life, I’ve learned to never give up on finding answers, seeking support, and when I feel low, hoping tomorrow might be different.
Tell me about the lowest point in your journey and how you got through it. Leave a comment below!
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