Caregivers Need a Support System, Too
I remember the day that Keegan's doctor called with his ankylosing spondylitis diagnosis. After 5 years of hip and back pain, and multiple doctors thinking he was there just for pain medication, it was a huge moment of relief for us. The X-ray confirmed two fused sacroiliac (SI) joints as well as other bone growth in his spine. It was a moment he had been waiting for. It was a moment I had been waiting for.
The diagnosis brought me only worry
Relief didn't come for me. Anxiety washed over me and I felt the need to Google. What did this mean for Keegan? What next steps did we need to take? Who was the best rheumatologist in the surrounding 100 miles? Was he going to have a shortened life because of AS?
The last question broke me. I sobbed as I tried to get chores done after work and I called my parents. I explained to them the diagnosis, and that he'd be referred to a local rheumatologist. But more importantly, I told them how scared I was. We had just been married 6 months prior and held off on our wedding ceremony so that we could get him diagnosed and travel wherever we needed to for the best care.
My best friend shortly after told me that it's just as important for caregivers to have a support system as the patient. And usually, the caregiver needed 2-3 people to support them through the journey. The crucial part for me was to accept that I would need this support.
How to design your system
So here's my advice for other caregivers out there: design your support system. Create the emotional, social, mental, and physical spaces for yourself. This goes beyond just "treating yourself" to nice things or experiences. Your life is too interconnected with who you're taking care of to not set up a routine of self-care.
- Find who you can confide in and will help you no matter what's going on. Brené Brown, research professor and writer, talks about being careful who you share your "shame stories" with, and I also believe that's similar to being a caregiver. Be mindful of who you talk to, and find those around you who won't demean you for feeling what you're feeling.
- Start filling in the small moments with activities that bring you joy. This is way easier than it sounds. While my husband was recovering from his first hip replacement and I was taking care of a 5-month-old, I remember feeling like I couldn't even set aside 10 minutes too meditate before bed. But I did it, and then it turned into 15 minutes, then I started reading again. Wow, I forgot how much I loved to read. The small moments turn into big ones.
- Tell your loved one how you feel. This is a touchy one, and has to be done at the right moment. It's easy for me to ask Keegan, "Are you okay today?" If he were to ask me the same question, I'd feel terrible answering if it were a rough day. I'm not the one with the disease, right? I'm not the one in pain, right? Recently I opened up to him, explaining how hard it is to see him in pain. He pointed out that his physical pain still translates to emotional pain for me. So I stopped comparing "his pain" and "my pain." More and more, I'm trying to see them as more connected and intertwined.
Keegan wants to support me just as much as I support him. We had to learn to stop comparing each other's suffering. Since then, we give each other those moments we need by openly communicating the good days and the rough days.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?