My husband’s perspective on living with a sick wife who has AIP
Our 'in sickness and in health' vows have been put to the test
“In sickness and in health, until death do us part.”
On April 27, 2019, my husband, Daniel, and I made the biggest commitment of our lives. Little did he know that less than two years later, sickness would overpower health.
In July 2020, I started experiencing symptoms of acute intermittent porphyria (AIP) and was diagnosed a few months later, in October, thanks to a long family history of AIP. Within two years, I was hospitalized more than 25 times.
Between writing this column for Porphyria News and my book, “I’m Not Always Me,” I’ve shared my story multiple times and in various ways. Today, I’d like to share my husband’s story about living with someone who has porphyria.
Daniel’s perspective
According to Daniel, he was relieved when I told him that I’d been diagnosed with porphyria, because doctors finally knew what was making me sick. But as my health worsened, Daniel started worrying because it was hard to find help for his sick wife.
When I asked him what it’s like living with someone who has AIP, he responded, “It sucks, because every little pain or soreness, or every little thing that’s out of routine, or anytime you don’t feel good, I wonder if we have to go to the hospital. Is the hospital going to do the right thing? How long are you going to be sick? Is the medicine going to help this time?”
All of Daniel’s responses are valid, especially considering that I have the same fears.
Daniel takes a photo of us on the Blue Ridge Parkway during one of my porphyria attacks. I still wanted to take a road trip, despite being sick and tired. That didn’t stop him, though! (Photo by Daniel Shelton)
“[It’s awesome] when you have your good days, though,” Daniel added. “I know there’s nothing I can do or the doctors or anybody can do to lessen the bad days. I guess one of the upsides to you being sick is when you feel good.”
Before I got sick, Daniel and I would go on road trips to sightsee and visit people, but my porphyria attacks limit our ability to do so.
Back then, I was able to work. Unfortunately, Daniel hurt his shoulder in 2017 and hasn’t been able to work since due to constant pain and limited mobility. Starting in 2020, I worked and brought in money for our family; however, that changed in April 2021.
At that point, I was working as an in-home caregiver, and one day I had an attack while with a 90-year-old client. I ended up having a seizure while at their home, which had a negative impact on my career. I wasn’t able to return to work until a doctor released me.
Unfortunately, that didn’t happen; I wasn’t able to work at all due to all of the attacks I was having. Every month, my menstrual cycle would trigger an attack, landing me in the hospital for days at a time. This caused Daniel a lot of stress.
However, through all of the ups and downs, in sickness and in health, he has never left my side. I am a blessed porphyria warrior!
Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.
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