Sleeping In My Partner's Bathtub Because of AS
College is where many people try new things and experiment with ideas.
For me, sleeping in a bathtub was one of the new things I tried, but it wasn't something I'd planned on. My body decided that for me.
The spasms began
In college, years before I was diagnosed with ankylosing spondylitis, but several years into my then-unexplained low back pain, the spasms began. They would happen when I was relaxed and almost asleep, and were painless but they caused my whole body to convulse. They lasted hours - seemingly days - until I would somehow eventually fall into restless sleep. There was nothing I could do to predict or stop them.
My partner at the time said he didn't mind the spasms, but I was embarrassed and ashamed. When I would stay over in his dorm room and they started, I would turn away from him to hide my tears. I felt guilty for keeping him awake while my body jerked uncontrollably, and I was emotionally and physically exhausted from clenching all the muscles in my body to fight the jolting in my body.
I would cry in the bathroom
After half an hour I would slip out of bed and into the bathroom where I would cry, rocking back and forth on the floor before crawling into the tub. Sometimes he would wake up and convince me to get back in bed. Other times I would wake just before dawn and get in bed for when he woke up. There were nights I slept all night in the tub, waking to the sound of him opening the bathroom door the next morning.
I hated it. I hated that I couldn't control my body and its convulsions. I hated that nothing we tried helped and I hated that the doctors I saw blamed my lower back pain on me being a college athlete, satisfied with their answer that I somehow brought this on myself. I learned to blame myself for the pain and the spasms - and for my inability to make them stop.
Reality was fuzzy
I became numb and confused about my own reality. Sleeping in the bathtub was my norm, yet I knew it would raise concern among friends and highlight my mystery "injuries" that I'd apparently caused, so I didn't talk about it. It was just something I dealt with, alone, at night.
Other parts of my pre-diagnosis years with AS I downplayed and masked with humor. I would joke about the back brace my friends were about to hug just before they embraced me. They learned to joke about it too. As my back pain increased, making it impossible to stand still or walk far without a grimace, I joked about my awkward, supposedly suggestive (they said it was, at least), "standing crunch stretch" as I hid my agony and temporary relief when my back snapped and popped, releasing what I assumed were pockets of painful air.
I didn't want to cause concern. Now, over a decade later, I can see how much I protected my agony from public view out of shame and fear. But the thing is, I still do it.
The numbness lasted
Over the years as I've become a public-facing advocate for AS, I've remained a bit numb to my own reality. I ask friends how my story affects them because the statement, "I don't know what it feels like to have no pain" (a pretty emotional statement, you'd think) has come out of my mouth so many times that I've lost the emotional significance of the words. I need friends to remind me that saying such things to strangers can make their jaws drop. I know the statement is true, but it's lost meaning for me because pain has been my normal for so long. I have to be reminded that the trauma I survive by living in a diseased body can be shocking for others to learn about.
I still think thoughts like:
"It takes too much energy to be that vulnerable."
"I'm terrified of what they will think or say."
"I just want to feel healthy for once."
"It's too much of a burden, they would run away if I told them."
Who else sleeps in their partner's bathtub, anyway?
We're in this together
But it's so important that I, and others like me (maybe that's you?!), share the realities of living with incurable, progressive diseases like ankylosing spondylitis. Even if I haven't a clue how to react to people reacting to my reality of never-ending pain, it's still important that my pain is real and to talk about it anyway.
I no longer sleep in the bathtub. I still endure spasms every now and then and I still haven't found a way to stop them. I experience them with my cats these days, and I have endured them in the company of recent partners. But I'm no longer ashamed. I no longer try to hide them. My spasms are even in a documentary, even though they are really hard for me to watch on the big screen because I have a hard time believing I'm in that much pain (they come with pain now). But I know now how important it is to show what I experience so others feel less alone.
Some things are out of our control
What happens to our bodies as a result of this disease can be out of our control. But we adjust, we slowly learn to live with a lot of it when we know we have no other option, and we move forward one day at a time. The biggest thing I've learned is that what AS does to me does not have to be endured in private. Well, I'm still learning that part, as you have just read. And I hope, if any part of this disease has caused you to hide your symptoms because you think you'll be a burden on others, that you, too, can get out of the tub and come clean alongside me.
Do you use the word disability to describe your AS?