Because of AIP, I’m no longer the dependable person I once was
Porphyria symptoms make it hard for me to keep my word
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“You can tell everything you need to know about a man by the way he shakes your hand. Eye contact and a firm grip show trust and respect. You can count on that person.”
I have held on to my dad’s advice for 27 years now, and while I’ve found that statement is not always true, I decided at a young age to uphold the firm handshake my daddy taught me. I admired people who stood by their word, and I was easily disappointed by those who didn’t. I wanted to be someone people could trust.
I was decent about doing things I said I would do — until I got sick with acute intermittent porphyria (AIP).
AIP has a firm grip — but I don’t trust it
Although I’m accepting it positively, AIP has forced me to cancel plans more times than I can count. In July 2020, I became an in-home caregiver. I immediately bonded with the two clients I was assigned to, and for the first time in my life, I really loved my job. But taking a day off as a caregiver isn’t always an option if a replacement isn’t available, as it would leave someone who cannot care for themselves without someone to help them.
I didn’t have to miss any days until my AIP symptoms became unbearable in late September and early October of that year. I had no choice but to call off work due to severe pain, mostly on the right side of my abdomen, along with fatigue, extreme nausea, and vomiting. Although arrangements were made, and my clients were taken care of, I felt like I’d let them and my employer down.
Between October 2020 and April 2021, I had to miss several days of work due to my symptoms. Although it was out of my control, not being able to do what I’d set out to do broke my spirit. I was supposed to take care of people; now, I was the one who needed extensive medical attention.
When I had a seizure at work with a dear client of mine, I realized I was no longer able to care for someone else on a regular basis. Since 2021, I’ve been able to work a little as a substitute teacher; however, I still don’t feel comfortable scheduling assignments days in advance. If I wake up feeling good, I’ll take an available position. Otherwise, I take it easy for the day.
People often ask me if I want to do something or if I can help them with a task. Although I’ve gone a year without being hospitalized due to a severe attack, I feel the symptoms of AIP daily. Therefore, I continue to limit myself and the things I do. It breaks my heart that I can no longer be the dependable person I once was. I know deep down, though, that I am a blessed porphyria warrior. I just have to take things day by day, and occasionally minute by minute.
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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