The 3 Biggest Shocks of Becoming a Caregiver
Last updated: May 2023
Some days, I don't really feel much like a caregiver to my husband, Keegan, who's suffered from AS for more than 10 years. The routine of getting up at 5:30 am to get breakfast ready, make coffee, clean before the kids get up, and get myself ready for work is normal. At least, it's normal now. But I've been reflecting lately on what it's like to transition into the role of the caregiver. I think back to the time before I found out about Keegan's condition. Did I realize what I was stepping into when we entered into this phase of our relationship?
Not really. I didn't see caregiving as a role I was taking on. Rather, it slowly became a role I took on as Keegan deteriorated more and more. For my experience, it came as a series of shocks that I had to deal with across his diagnosis and treatment journey.
So here I am, to tell you fellow AS warriors and caregivers about the 3 biggest shocks of becoming a caregiver.
1. Life feels ugly and beautiful at the same time.
Every day, AS is around me. I have no idea what it feels like. It's strange witnessing a disease every day when I'm not the one going through the symptoms. But, I constantly am thankful for my own health. I see how delicate yet strong Keegan is for enduring the pain, brain fog, and other variety of symptoms he has.
At first, his diagnosis seemed like a life sentence that could only bring extreme suffering for our family. At the time, he could barely walk. I didn't lose hope, but I wondered how much hope doctors had. But, my persistence paid off after researching for months about his disease and finding a top doctor at Johns Hopkins who would see him. I realized that despite having this disease, there are always people out there who want to help.
2. No day looks the same, but keeping routines helps bring a sense of certainty.
Dealing with uncertainty isn't easy for many of us. I like routines. I like familiarity. It's safe and comfortable and a happy place. Ultimately, it's not what life is about. It was so hard in the early years of Keegan's disease when I had no idea what the next day would bring. Not just in terms of symptoms, but test results, doctor's appointments, and whether his body would react well to treatments.
So, I found things to focus on that were in my control. For the first time in my life, I started running regularly. I got to the point I even ran a half marathon! For me, finding some kind of routine helps me know that even in the darkest moments, there is relief.
3. No end doesn't mean no relief.
One of the toughest parts of transitioning into a caregiver role is realizing that AS will never go away. Sure, symptoms will get better and surgeries can alleviate much of what Keegan deals with. But I'm never not going to be a caregiver. That's a daunting realization. I've had to sit down and face this head-on at times. What does this really mean? What do I need to do to help myself get through all the stress, trauma, and anxiety in the long haul? Two big pieces helped me with this shocker: finding friends and knowing that relief can and will come, even in small moments.
So here I am, nearly 10 years later of helping Keegan through his AS journey. I wonder what the next decades will bring for us. All I can hope for is AS in remission and a healthy and happy family.
Have you ever had to take a leave of absence from work due to your symptoms?
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