A Look At My AS Caregiver Journey
Hello AnkylosingSpondylitis.net, and all the wonderful members of this community. I am so excited to be a new contributor! My name is Ben Falchi and I am a seasoned real estate professional living in New York with my partner, Lisa Marie Basile: a person with ankylosing spondylitis, a basically famous author, and AnkylosingSpondylitis.net contributor and moderator.
I'm new here
A little bit about me: I was born in New York. My family is English and I grew up in Windsor (yes, where the castle is!), and graduated from Brighton University with a degree in applied psychology. Fortunately for me (but unfortunately for others), I am no stranger to providing support to patients with chronic illness.
I've been a caregiver for a long time
I grew up with a family member who lived with Crohn’s disease. My mother is one of her main caregivers. I have some difficult memories, as well as some quite funny ones from my childhood, regarding her disease. Let’s face it — Crohn’s and flatulence go hand in hand — and flatulence and children are a match made in comedy heaven. There were plenty of times that she found it funny as well, so I learned to approach caregiving with a sense of humor in addition to compassion.
There were some difficult times, too. They revolved around her pain and distinct memories of not understanding why she was in pain. “She didn’t hurt herself,” my mum would say when I asked. “She just isn’t feeling well today.” I never really understood what that meant as a child. It wasn’t until later that I found out not all pain is visible. Not all pain is caused by an external force. Sometimes pain starts from within.
And now I help my partner
All of this has definitely been serendipitous in my adult life with my wonderful partner, Lisa. As Lisa’s main caregiver, I provide daily emotional and physical support — usually by reminding her to get moving when she’s stiff, not to binge-eat cheese (dairy is no good for many AS patients), and inspiring her to keep her chin up in tough moments.
When we first learned about the diagnosis it actually wasn’t much of a shock. Her father has AS, and we knew the disease is largely hereditary. Lisa had also felt some of the symptoms for many years and although she hadn’t been diagnosed officially she felt fairly sure she had it.
It's been tough
When the formal diagnosis was finally given I’d be lying if I said we didn’t have a few blue days afterwards. The silver lining was clear: With the diagnosis in hand, she was able to use science to tackle her “phantom” pains, fatigue, and brain fog and seek out advice from other AS patients (like those in this wonderful community).
This journey has taught us a number of things about ourselves — and each other. I have become a great deal more empathetic and compassionate, and it has also taught me to be more patient with others.
I worry about our future
I do have concerns about our future. For example, I wonder if our future children might have the very same disease that causes the person I love so much pain. Sometimes I’m left with a pit in my stomach, but then I remind myself that nothing is certain in this world and some things are just out of your hands.
For Lisa, it has been and will be a tougher road. The biggest hurdle for her was getting over the "why me" feeling — and honestly, there was no quick fix for that. Sometimes you just have to ride the roller coaster. It took time and support — and a lot of it.
But we are strong, and I'm ready to share
As crazy as it sounds, though, this disease has actually brought us closer. Now, our relationship is stronger than ever. Going forward in this column, I’ll be sharing my perspective as a caregiver. I’ll be going over how me and Lisa develop good habits and routine, and I’ll also talk about "policing the patient," because sometimes tough love is the right love.
I might even tackle some slightly more risqué subjects like intimacy during a marathon flare-up and all the not-so-fun or glamorous gut issues that can plague those with AS (remember when I mentioned the cheese above?). Of course, I’ll get into how caregivers also need to take care of themselves.
AS can really really suck at times. There is no other way to say it! But from what I have learned, people with AS can have a full and wonderful life with the right habits and the right support. I am looking forward to being a part of this community and getting to know you all!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?