This morning I woke up alone, after going to bed alone, after taking my medication alone, after eating alone, after seeing my rheumatologist alone, after hobbling to the clinic to get x-rays alone. I am a subscriber to the school of thought that mindset is everything, that we have the power to overcome any obstacle through the choices we make and through understanding our emotional connection to our pain. However, there are some physical realities that you just cannot think your way out of. The pain I carry with me daily at times feels heavier than I feel I am able to carry. Sometimes, as I’m sure many of you who are now reading this will have experienced too, I feel as though it is too much to bear and I collapse into a fatigue-fueled depression.
I am a young, single, and, for the most part, a vibrant and adventurous woman with a real love of connecting with other people and sharing this wonderful life- whether the experiences are positive or painful. I never used to have a problem making friends or dating but since my injury last year and subsequent diagnosis of AS, and I suppose with the after-shock of all the COVID lock-downs, I have become increasingly isolated. I find it difficult to socialize because I am often unable to participate in social events and when I do, I don’t know how to communicate with people the realities of my life with AS.
Receiving a diagnosis of AS
When I first received my diagnosis I told a friend the name of my condition and she laughed at the almost unpronounceable name. She laughed harder still when I told her that it even has an acronym. Many of my friends have drifted away since my diagnosis because my lifestyle has changed so dramatically that it is now incompatible with theirs, or because they are not able to participate with me in activities that are better suited to my requirements now- like drinking tea in the afternoon instead of Negronis at midnight. And new friends are not able to fully understand what it is that I have gone through, or become frustrated with me for constantly declining invitations because ‘I’m tired’.
I have been trying to date. But I have so many fears surrounding the changes that my body has gone through and rarely feel comfortable expressing them to someone I just met on Tinder. The reality is that for someone to be with me longterm, they need to be okay with the fact that at some point I will need support during recovery from surgeries or when I can’t get out of bed during a flare-up. They also need to understand that because of my physical impairments, sex is not always easy. All of this obviously drives a lot of people out the door pretty fast.
Fear of the future
I’m in a place right now where I am fearful that the future is going to be as lonely as it is now. With all of my health considerations, and with the way that a lot of people nowadays are just unavailable for whatever reason, it is starting to seem impossible that I will ever find companionship. My loneliness is getting to me and it’s making my physical pain so much worse and I really don’t know what to do about it.
I read a quote the other day that said ‘from great loneliness comes great art’, so I guess all I can do for right now is try to fill the emptiness with work that comes from pain, but with creativity and passion, brings some beauty to my life, and hopefully to the lives of others who have found themselves in the same place as me.
Finding my most authentic self
The grief I feel over losing the woman that I once was, over finding myself in this position at 30 with no idea how to get out of it, over truly wanting to share love (whether romantic or other) with people but not being able to, is driving me to write in a more authentic way and this does bring me some comfort.
I will leave you with a poem I wrote recently:
Come to My Sick Bed
I’ll take care of you, spoken by a friend in a language I hadn’t yet grasped,
is still the sweetest line I’ve ever heard.
The whole apartment is my bed and the sickness drips from it;
shuttered blinds hold me close.
Conditions curl around like new lovers; diagnoses have entered my vernacular
as permeant and unwelcome as the taste of boiled eggshells.
I look through old photos and remember old smells;
linseed, tatami, unwashed hair, damp canvas, jet fuel.
I remember the woman I was yesterday and I grieve for her. Not only because I miss her,
but because she is headed straight for today’s turmoil
Come to my sick bed, sit by its edge and weep
with me in monochrome dawn, lay your hands on my abraded joints.
But leave straight after because this pain is all I have today,
and I will not give it to you.
Do you live with any other conditions in addition to AS? (choose all that apply)