It was a typical afternoon rush hour on public transit. People crammed onto the bus, clinging to poles and hanging straps in an effort to remain stable during travel. I gravitated towards a pole and hung on – as more people boarded, I looked through the spaces, searching for the next pole I to which could move. The hanging straps and bars overhead were too far out of my reach and would make it difficult for me to grip. I tried my best to step to the side, encouraging taller, more able people to fill in the spaces that remained. A woman, at least a head taller than me, tried to force me away from my support – suddenly, I heard myself say “please go ahead, I have arthritis and have difficulty reaching over head”.
I wasn’t really thinking about it, it just flew out of my mouth. After years of masking my situation, I was forced to play the arthritis card. I’ve never had to do that before. I find people on most days to be congenial and polite, however, in the last couple of days I’ve noticed a strange vibe in the air, making people grumpy, intolerant and in some cases rendering them completely obtuse. I don’t know if it’s the moon teasing our emotions, or the mounting stresses that rise out of a growing population of a major city, or the suffocating heat that has arrived too early in our part of the world, but something has been seething beneath the surface, making people impatient, frustrated and, in some cases, downright rude.
After I announced my difficulty, a young woman stood up and offered me her seat. I didn’t really need it and was kind of hesitant to accept it, but I was impressed that somebody had recognized my struggle. I saw people looking at me after my rather clumsy announcement. I knew what they were thinking – in spite of my finger splints I saw the expression on their faces: “she doesn’t look sick” – but that shouldn’t have mattered. The fact is, we don’t really know what battles people are fighting, and I shouldn’t have to be unwell or look disabled to have access to a safety feature on public transportation. It bothered me that the only way to earn some respect and consideration was to play the arthritis card. It’s odd how quickly a change in perception occurs when someone sees you as ill or disabled. There are many reactions to learning about someone’s malady, and sometimes, they are not always cordial. Here is a powerful post from Carla’s Corner about her experience when an invisible disease becomes visible: https://carlascorner.wordpress.com/2015/05/26/being-invisible-reprise/
I didn’t realize I had the arthritis card tucked into my back pocket. My invisible disease usually plays its part to perfection – dealing with it has fallen into the natural realm of my daily routine. I am not ashamed of having arthritis, in fact I lay my cards out every week on this blog and I’ve shared my story a few times – and surely, this type of behaviour shouldn’t be about arthritis or any chronic illness – it should be about a general respect for people. I don’t feel it’s necessary to play my arthritis card, but from this unexpected experience, I’ve learned that I will put my safety and well-being before discourtesy and ignorance, and in the future I will not hesitate to pull out my cards and let them fall where they may.
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J.G. Chayko is a writer, actress, and international arthritis advocate who’s been involved in theatre for more than 30 years and has published poetry, fiction, and creative non-fiction.
Good on you. 🙂
I do admire you greatly for playing your cards and speaking out.
We hide so many illnesses from the world and the world has become intolerant of our imperfections.
If people were to share on the outside what was wrong on the inside, a button badge on a jacket lapel or one of those stretchy rubber wristbands which have become fashionable, then the world might become a little more caring again, and what’s more, fellow sufferers wouldn’t feel so alone. 🙂
Thank you. I actually surprised myself when I said it – I consider myself generally able and healthy despite my disease. I know when to back off and give myself a break, and I know my limitations, but I never thought I’d have to voice my struggles until I was forced into a situation that might bring me injury. Thanks for stopping by – always lovely to hear from you. Wishing you well 🙂
I would say “Well done lady”. I have osteoarthritis and fibromyalgia and i have been suffering for a long time; I cannot walk on my own,because i lose my balance, I use my shopping trolley as support while i am walking; sometimes i use my cane stick. One day when i was trying to do some shopping in a shop, this strange woman looked at me and kicked my shopping trolley; I could not say anything but the workers in that shop said enough to embarrass her. It is very difficult to tell or explain the people that you have an illness and you suffer a lot; how do they know that you suddenly collapse with a sharp pain, or you get very tired while you are talking to somebody, or you feel very hurt because you want to do lots of things but you are unable to do it because of the restriction your illness makes you…..i used to be a hard worker.
I am sorry to hear people have been unkind to you. It’s hard enough dealing with our own physical limitations without others knocking us down. Thank you for sharing your story, and I wish you more good days than bad. Best, J.G.
I know exactly how you feel. When I go to the supermarket, I always try and get a “handicapped” parking space close to the entrance. Very often they are all taken – I suspect sometimes by people who are perfectly active! But I have given up counting the number of times that irritated customers point to the “handicapped” sign and waggle a “no” finger at me. I draw attention to my “handicapped” parking card, and they walk sheepishly away.
I have seen what I perceive to be perfectly healthy people park in handicapped zones – if they are not, they should have a handicapped parking card to indicate they belong there. I would say you have no reason to “sheepishly” walk away – after pointing out your perfectly legitimate reason, you should walk away with your head held high. Thank you for coming on and sharing your experience. Wishing you well.