Realizing AS Changes Everything
Growing up, I had heard of others in my family being diagnosed with serious and life-changing illnesses, but they were older. That's when life deals that card to us. It's expected that older age brings illness. That was until I saw a friend from college pass away from a heart condition that shook my best friend's core. And shortly after, my husband, Keegan, was diagnosed with ankylosing spondylitis. The innocence I clung to in my youth was taken away quickly.
I'll never forget those days, as the last Harry Potter film was released in theaters. It was the perfect closure to a chapter of my life, but it meant starting in a new direction. For my best friend, it meant supporting her even though we live many miles apart. And for Keegan, it meant seeing life in a new way. We're not immune from illness no matter our age. However, that realization took some time to internalize.
The shock of a diagnosis
I remember people saying, "Well at least you have a diagnosis now!" That was absolutely true. Knowing why Keegan had pain and immobility was relieving, but information is only the first step on a new path. I Googled ankylosing spondylitis. Then I was confronted with the realization that there was more to this disease than just the back pain he was already suffering.
I cried while doing research
Total spinal fusion. Potential heart problems. A life of pain.
Tears blurred the symptoms I read on my phone and I couldn't handle it anymore. I was in shock. The love of my life had been diagnosed with a rare chronic disease that would bring possibly never-ending pain. I remember calling family members begging them to tell me what I should do next. Yes, we were going to see a specialist, but what about the impact on us? We weren't even married yet and life had dropped some big bumps in the road for us.
If I could go back in time, I would tell myself to start seeing a therapist or at least find a support person in my friends or family I could speak with openly without judgment. I didn't give myself time to process what had happened, and for years, struggled to feel like everything was going to be okay. I'd also tell myself, "Get off Google." What I had learned about AS from health sites versus what the rheumatologist told us was night and day. My Google-based prognosis was much worse than the doctor's.
Denial and acceptance
I'm not sure about Keegan, but I went through a lot of grief. I didn't realize it then, but I do now. I was grieving over the fact that he'd miss out on opportunities in life because of AS. He already had. And that meant we, as a couple, may not be able to experience all the things we had dreamed about. I grieved the past, and times I felt like I didn't help him as much as I could have. I grieved the future. It all hit a pinnacle when we met his doctor and I finally asked, "Will this affect Keegan's life expectancy?"
"No," he responded quickly with a smile on his face.
At no point in this process did I ever question staying with Keegan. He was mine and I was his. We've been a unit since we were 17 years old. Perhaps this made our decision making easier, but even before we were married we were committed to each other in sickness or in health. I decided that my goal was to make our lives the most comfortable and joyous years they could be.
Defining a new normal
I remember we asked Keegan's current rheumatologist what to expect one he started a biologic, Humira. She said because each person is so different, she couldn't tell us without monitoring him over the course of the next year. What normal would look like could differ drastically from others with AS. As unsatisfying as it was to hear that in the moment, I appreciate her honesty. It helped us know what a "normal" day looks like. For Keegan, it's:
- Waking up with nausea and tightness in his muscles
- Having pain throughout the day
- Needing support through certain tasks
- Creating open and clear communication channels, including being honest about his pain levels with me and other friends and family
- Brain fog is a regular occurrence, as much as it sucks
But a new normal also brought on relief, like:
- No more constant back spasms
- Hypnic jerks were over! (Those moments when muscles involuntarily move or jolt before falling asleep)
- Pain management is possible
- Enjoying yoga for the first time
- Being able to tie his shoes for the first time in years
- Accepting the mental pain of the past and each of us going to therapy every week!
A new normal may sound scary, but it's not. For us, it's been a revolution. We would have never chosen this disease. However, AS brought clarity and priority to our lives. We know what's important, our family, and how to stay healthy and comfortable even through the worst.
Do you use the word disability to describe your AS?