I recognize that this week is vital for a few reasons, 1. It spreads awareness not only about Rheumatoid Arthritis, but about all variety of arthritis. and 2. It allows regular folks like myself to share with you what a typical day in the life of someone with Ankylosing Spondylitis and how that impacts my day! Just so you can get some insight about how it feels, how it shapes my experience in this world.
I have been off work because of my chronic pain associated with Ankylosing Spondylitis since February. I am seemingly looking for that "magic pill" that will somehow reduce my pain levels from a regular 9 or 8 on the scale, to a "manageable" 5 maybe? so that I may then head back to work....in the meanwhile, I spend my time just trying to do every day chores, prepare for a big move (to a house without stairs); and cope with the aches and pains of everyday living.
This summer I had to purchase a rollator/walker. It has been a saving grace and yet, has also been a terribly humbling experience. It allows me to sit whenever the pain in my lower back is unbearable, and yet....it attaches to itself certain assumptions, and the stares from people are constant and always intrusive...I am, afterall, only 43, and have that "how-can-she-possibly-need-that" look about me.
One summer day, I woke up....raw from pain, sore all over, and exceedingly stiff and decided that, in order to get some exercise, I should head to the mall and walk a lap....after a painful shower, and getting dressed in comfy stretchy pants....I headed out ready to do some walking.
The first few minutes in the mall were great. The pain was manageable, and I even managed to try on some new clothes in various fitting rooms....then I kept going....the swelling in my body becoming even more noticeable, and the "pain sweats" fully expressing themselves it was becoming unbearable yet again...but I forged on. I even managed to buy a few nice T shirts in one of my favourite stores. The lovely sales lady was making some small talk with me, as I sat in on my walker, waiting to check out and pay my bill....and then she asked...."how long are you at the mall?"...this was a seemingly random question...I answered with "as long as I like? ". And I scanned the mall...looking for clues as to why she asked what she did...and then, I saw it.....the various clusters of elderly folk with walkers, wheelchairs, canes...enjoying their "day out" from the seniors' home. I was shocked....I ...suddenly was being "lumped" into that category. It was a deeply troubling assumption and stereotype...I then said "no, I am not a part of the bus crowd just yet..." ; the sales lady was so embarrassed and blushed a deep red.."oh...of course not...you are too young!" she smiled....but the damage was done...
I left satisfied with my purchase...but....acutely aware of how people with invisible illnesses are perceived in the community at large; people without any real independence, forever clumped together as "needy and dependent".....and it hurt. I am not there yet.......but I was very close.....and it scared me.
No comments:
Post a Comment