Why giving voice to my invisible symptoms isn’t complaining
When coping with the pain of ankylosing spondylitis, we need validation
Last night, my husband, Dave, and I were sitting outside, drinks in hand, with a sliver of moon hanging above us in the deepening indigo sky. We both gasped and said, “Ooooh, wow,” as a shooting star flared briefly overhead, then turned back to each other to continue our chat.
Our discussion meandered through many topics, from the insanely high price of meat and mortgage rates to some recent parenting challenges. As we often do, Dave and I also checked in with each other on our current ankylosing spondylitis (AS) discomfort levels and treatment strategies.
“If we didn’t both have AS, do you think we’d talk about it as much?” I asked him.
“Probably not,” he replied after consideration.
It made me think how lucky we are to have a life partner who’s genuinely interested to hear the other’s feelings and experiences of living with AS.
Living with a chronic disease like AS is so much more than adapting to stiffness and painful joints. It affects our ability to cope with daily life and challenges, as well as our mental state, our sleep, our work, our relationships, our identity, and our goals.
I recently interviewed my sister, Angie, who’s also been diagnosed with AS. In that interview, she summed up the life-changing devastation caused by our disease when she said, “I feel like my identity was ripped away, and I really miss the old me.” Wow. Her statement punched me right in the gut. I’ve felt that way many times, as I’m sure other people with life-affecting chronic diseases do.
Fighting AS is a mental battle just as much as a physical one, which is why I’ve found that regularly talking about my AS can have such a profoundly positive outcome.
When human connection helps us deal with pain
Just a few days before our evening talk, Dave’s empathy and understanding had helped me get through a surprisingly painful situation related to my ankylosing spondylitis.
His aunt had popped in for a cup of tea, and we’d all been sitting around the table chatting. While we were catching up on family events, my sternum and left rib joints were feeling increasingly tight and painful, and they worsened as I tried to calm myself with some deep breaths. Feeling anxious and extremely uncomfortable, I finally shoved my chair back from the table and paced up and down, trying to walk through the pain.
Dave, seeing what must have been panic on my face, turned me to face him and looked into my eyes.
“Is your sternum hurting, here?” he asked, gently tapping on my breastbone, just beneath my necklace.
Nodding, I quietly replied, “I feel like I can’t breathe properly. It hurts too much.”
“I’ve had that,” he replied. “It’s horrible.”
Instantly, I felt a wave of relief because someone was listening to me. I wasn’t alone in my invisible anguish. Dave’s validation made me feel understood and cared for, which helped me calm down and find a positive path through the challenge.
Why invisible disease can be lonely
Because no one can see our AS symptoms, we often don’t get sympathy or help from others unless we talk about it. This truth makes it even more important that we share our feelings, both mental and physical, with our family and friends.
If I keep my thoughts about dealing with AS to myself, I feel isolated and spend a lot of time worrying that I’m making the wrong decisions. If I didn’t have a husband who’s happy to discuss AS and its many challenges, I’d probably struggle a lot more.
I have to admit that I sometimes feel guilty talking about my problems because I don’t want to be seen as complaining. But in reality, talking about problems just makes us human. Often, starting a discussion about challenges with a friend or family member will lead to us both sharing some deep feelings and building a stronger connection and mutual understanding.
The power of validation
If the pain of AS is making me tired and irritable, or if I’m having a hard time moving, it helps immensely to describe my frustration and have someone say, “Gosh, that must be hard.”
“Feedback from others that what you are experiencing is normal or makes sense lets you know that you [are] thinking and feeling in understandable ways,” Karyn Hall, PhD, explains in her 2012 PsychCentral article, “What is Validation and Why Do I Need to Know.”
I’ve realized that talking about my struggle with AS isn’t complaining (as long as it’s not all I talk about!). Sharing my difficulty gives my invisible struggle a voice. Having my feelings about AS heard makes it possible for friends and family to offer the encouragement and support I need to push through difficult times.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
Barb Hale Terpening
Until I read this article I didn’t know anyone else had the sternal pain that made it feel like I had metal straps wrapped around my chest. The pain got so severe that I actually thought that death was the only escape. I told doctor after doctor that I could no longer live like this but they all thought I was exaggerating or speaking in hyperbole. Finally I found a pain management doctor who understood exactly what I was saying. With his help I am now more comfortable. I Amy so happy for both of you that you have each other and that you both understand.
Oh Barb that sounds so painful, and it's definitely not just you. I really appreciate you sharing your experience. It's not fair for people to think you're exaggerating either, because YOU are the only person who can feel what is happening with your body. I'm relieved to hear you found a good pain management doctor, it can make all the difference having a medical team who really listen and help.