What Next?: Feeling Lost Immediately After Diagnosis
I remember the moment when the doctor's office called Keegan, my husband, to tell him of his AxSpA diagnosis. I remember it was rainy that day, and I had just gotten home from work. It wasn't even the doctor who called, but a nurse. I didn't hear the conversation, but Keegan showed me a piece of paper where he had written down the diagnosis. (They called to tell him it was ankylosing spondylitis and he asked them to spell it out. That was their way of telling us it was AxSpA.)
My next memory of the day is a call to my dad, as I cried and tried to get chores done around the house. While the road to diagnosis was literally and figuratively painful, finally having an answer to our million questions felt really strange. Like a striking silence after hours of noise. The path to Keegan's diagnosis warrants its own article, but recently I've been reflecting on the shock after getting diagnosed.
The hardest part for me after his diagnosis was the million new questions
I didn't give myself time to emotionally react, which I regret now. My fiance, at the time, finally had a life-altering diagnosis. But I felt the need to move into action. Seeing the diagnosis on paper made me panic. What now? What kind of doctor do we see? Is he going to die? Is this like cancer? I let these questions overwhelm me in the moment and I panicked.
Looking back, I'd tell myself to just sit down and give Keegan a big hug. Although my go-to behavior in these situations is to act and make things better, I needed to acknowledge how each one of us was feeling. Keegan hadn't even called his parents to share the news and I already was Googling what the disease was, common treatments, the best doctors in the country, etc. I ignored the emotional storm inside.
We weren't ready to share with family and friends when we did share
While we hoped to share the news with our families as soon as we heard anything from a series of X-rays and blood tests Keegan went through, we needed to pause. The shock of the diagnosis warrants a moment to strategize with family. I'll give my 24-year-old self some slack with this one, but I wish I could have taken the time with Keegan how to share the news. Who did he want to share with first? Should we put anything on Facebook?
Another lesson learned was to not overshare. Facebook, while great for certain things, wasn't for sharing a diagnosis hours after finding out from the doctor. (Unless you want to hear how every possible snake oil and vitamin will cure AxSpa.) We also didn't really have a game plan to make our family feel better about what kind of path we'd be on now. Looking back, we just needed the moment to stop and figure things out for ourselves first.
Finding out the diagnosis is only part of the story
The other part is to decide on a treatment plan.
We talk a lot about the road to diagnosis, and that's a huge part of all of the AxSpa stories. However, for us, the harder road has been discovering treatments that actually treat Keegan's AxSpA. We were filled with fear of biologics' side effects. We were uncertain about getting him on NSAIDs as a daily routine. We didn't know how his body would respond. What I didn't realize going into the treatment phase was how I'd feel almost more lost than when he didn't have a diagnosis.
The uncertainty of every medication, physical therapy exercise and dietary change was overwhelming. Now that we knew the cause of pain and immobility, we didn't know if anything could help him. Every treatment that didn't work made the world seem a little darker. But Keegan would always stay positive in those moments. He'd tell me not to lose hope, and that something had to help him, even just a little. And he was right.
His treatment journey isn't over, and it's been almost 8 years since his diagnosis. That's more time than it took from the onset of symptoms to his diagnosis. So, to any of you out there feeling a whole new wave of fear, anxiety, and uncertainty, we're there with you! Taking things one day at a time and feeling grateful for what we do have helps us the most.
If you have any tips on how you coped with the shock of diagnosis, we'd love to hear it!
Does reading AxSpA patient stories help you in your journey?