I was introduced to HAE by my wife on our first date. I think we both knew our relationship was going to be something special, so she wanted to be open with me about something that was a major part of her life.
She did her best to explain HAE to me, what she does to treat it, and showed me her port. I tried my best to understand and ask any questions I had, but I don’t have any background in medicine, nor do I have any friends with significant medical diagnoses, so I didn’t know the right questions to ask. I wasn’t sure if it was permanent, how severe, or what her life would look like in the future. Although I liked her, I was concerned with what that meant as a future partner, maybe mother, and how that would impact the plans for my life.
The next morning, I did what I’m sure many young men who had questions would do, I called my mother. My mother had been a school nurse for most of my life, so she dealt with many health conditions and the associated terminology. Although as much as she tries, she can’t know everything. She tried her best to explain what she found via a Google search, but she came away from our conversation with more questions than answers.
I was lucky enough to continue going on dates with the woman who would become my wife, and I would keep asking questions as they would come up. Slowly, I learned what HAE looked like in her daily life, but didn’t really get to see the ugly side of it until one week when I was visiting her at college.
She had a bad throat swell, so we went to the emergency room. I got to see how poorly treatment can go when health professionals are uninterested or complacent in their methods of treatment. It was disappointing and frustrating to see doctors, who I’ve always held in high regard, not listening or trying to ask questions like I had. My wife had been trying to offer information freely and doing her best to advocate for herself, but the doctors would act like they had dealt with this a thousand times before, or that it wasn’t that serious, and move on. While we got through the swell and went home without issue, it showed me how I could help.
As I took on the role of boyfriend, I also started to take on the role of her caregiver. I made sure to keep a calendar of when she should be taking preventative medicine, confirming that she packed the right preventative and emergency medications if we were traveling, and providing an environment where she would not be subjected to too many physical or emotional stressors.
As our relationship progressed, so did the medical advancements, and her treatment would no longer require a port. She had it scheduled to be removed and this caused her a lot of emotional stress, as she was worried about having a swell during or after the surgery. This is where I had to show confidence even when I had no reason to be. I had to be calm in the face of the unknown. We are lucky that her primary doctor is very well informed on HAE and is a curious mind that asks questions. He helped put together a team for the surgery that made us both feel comfortable with the procedure, and would do their best in the event anything went wrong. This might have made all the difference, as her being comfortable with the procedure and the team might have prevented a swell.
It has been a while since we have gone to the hospital for an attack. We understand that we are lucky for this, but it is something that we are always aware of and actively preventing. I make sure that she stays on top of her preventative medicine schedule, create environments to reduce stressors, and make sure she treats swells early no matter how small they are. When I first heard the term “caregiver,” I thought it didn’t apply to me. While I have administered emergency medicine and taken her to the emergency room, I wasn’t under the impression that I was doing anything special. My wife is a very independent woman, and she doesn’t need someone waiting on her at all times. I realize now that my role as a caregiver is helping to provide her a good environment to be in and reminding her to keep to a routine. If I notice she is getting overwhelmed, I tell her to take a break. If she starts to have a small swell in her hands or feet, I make sure she stops what she is doing to treat it, rather than trying to work through it. Being a caregiver to me is being available to help, and advocate for her when she cannot.
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