Acute Intermittent Porphyria (AIP)
Warren Hudson, who serves on the APF Board of Directors, has agreed to head our Caretaker Support Forum for spouses or partners who help their loved one cope with porphyria. If you would like to participate in the Caretaker group, please contact the APF for Warren's contact information. Below is Warren’s story.
"Porphyria is a large part of my life effecting relationships and day-to-day activities. It controls my ability to work, what kind of jobs I can take, and how I care of my family. Porphyria cost me friendships and takes a great mental and physical toll. I am extremely afraid of the simple act of visiting new doctors. I go prepared with questions and the expectation of disappointment or rejection. The horror related to a hospitalization is something I am unable to put into words. I know my story is common for those suffering with one of the Acute Porphyrias. However, I do not have Porphyria. I am the husband and caregiver of someone with Acute Intermittent Porphyria (AIP). My experience lacks the physical pain but gives me a front row seat to hers and confronts me with an overall feeling of helplessness.?
The role of caregiver for a Porphyria patient has been largely unexplored. Obviously, the patient is everyone’s primary concern—as they should be our focus. However, a strong healthy caregiver provides better long-term support. It is all too easy for both caregiver and patient to focus on the patient. In my case, this comes with consequences. At first, both my wife and I treated AIP as something separate from our relationship and our lives. This was unrealistic and fed many disappointments for both of us when we realized the disorder could not be igno
red. We strive to understand how it is part of our lives and work together to limits its effect. I wanted to share some experiences, provide insight and hopefully help others in my position.My wife and I were friends since the age of fourteen, and AIP was never a topic of conversation. I vaguely remember her talking about a hospitalized cousin with extreme pain, paralysis and an undiagnosed illness. However, this was a passing conversation in our mid-teens. Fifteen years after we initially met, her AIP symptoms started. I saw my future wife get increasingly depressed and her frustration build. Often, I was the closest person around taking the brunt of her anger and frustration. In these instances the caregiver’s role can be very lonely.
In 2003 my wife had an extremely bad attack. I ended up taking off of work for a month, sleeping on the floor next to her in the hospital and being my wife’s advocate with nurses and doctors when she was unable to speak for herself. Over the years, this scene has replayed numerous times. I had hospital doctors tell me my wife was faking her symptoms or the pain she described was not possible. I have been called an enabler and accomplice. Despite this, I attempt to continue to advocate for my wife’s care and ensure medications are appropriate and her needs met. In extreme cases, I document everything from the time a nurse walks in the room, take pictures of allergic reactions, list medications given and what was said by whom. Every time I go through this process it causes me profound sadness. It seems like an injustice that anyone should have to jump through these hoops to ensure medical care is adequate. I end up feeling like an administrator rather than a husband, but I have caught too many mistakes to stop.
A few months ago I had the opportunity to have breakfast with another husband of an AIP patient. In a year I speak with doctors, healthcare providers, insurance personnel and other Porphyria patients, but rarely do I get to speak to a fellow caregiver. We shared our experiences, fears, and frustrations. The ability to just talk and listen without judgment was cathartic. In these moments, I am reminded my wife and I are not the only people dealing with these issues. No matter how bad it seems, there is someone else who has gone through something similar. Several years ago I was part of a group of patients and spouses sharing our experiences with the makers of Panhematin. I was struck with how familiar each patient’s story sounded. Away from the group, a few spouses and I shared some of the burdens AIP placed on each of our relationships. These too sounded very familiar.
Every relationship has stresses, but AIP presents some that are new and amplifies others. One of my biggest problems has been its effect on my career. I was offered a position with a company in the United Arab Emirates, and had to turn it down because their Ministry of Health would not allow my wife into the country due to medications she might require. AIP affected our ability to travel to visit friends or take vacations. The risk my wife would become ill and need treatment while on the road is ever-present. We lost friends who felt they were “blown off” because we did not travel to see them. Some of our friends did not understand why, during periods when my wife was extremely ill, we failed to call or write. Even some family withdrew because they simply did not understand our limitations.
I think one my biggest problems, and generally Porphyria caregivers, is that we do not talk enough to others in a similar position. We tend to hold back, bottle up our emotions, focus on our loved ones and in my case, internalize my frustrations and fears. This can be isolating and unhealthy. I took my personal concerns, pains or illnesses and measured them up against what my wife experienced. In comparison, my problems seemed petty. If I got sick, I treated my illness like something I should push through or shrug off. If I physically could not go to work or do something for my wife I felt guilty because I knew she got out and did things when a day before she was unable to walk. My focus on caring for my wife and not caring for myself affected my health. I gained a large amount of weight and became increasingly depressed.
Even when those closest to me were concerned and wanted to talk, I held back details because it felt like I was betraying my wife by discussing her AIP and how it affected me. I am not suggesting these are common experiences of all caregivers, but as a patient, realize these people by your sides are not passive observers but right there in the trenches with you. It is very easy for those of us in the caregiver’s role to become immersed in the problems of our loved one and neglect ourselves.
The irony of putting someone else’s needs ahead of your own is that both people suffer. It is critical that those of us in the caregiver role take the time to ensure our own needs are being met and that we do not neglect the most important person, ourselves. In order for our spouses, family, friends or loved ones to get the care they need it is imperative that we take care of ourselves both mentally and physically. Reach out to other caregivers if you need advice or a sympathetic ear. Get involved in things that bring you joy. These have been hard lessons for me to learn, and something I struggle with on a daily basis. If you remember anything else, please know neither the patient nor the caregiver is alone in this journey."