Angry Birds, Bad Horror Movies and Invisible Illness

There is nothing more uncomfortable than looking up to find a dozen people staring at you! This was the feeling I had recently on my commute to work.

Breaking wind loudly, accidentally saying the word “lol”, swearing profusely at that last little green pig that refuses to die on the latest installment of Angry Birds, these are all valid reasons for staring at me on the train. Not that I would admit to doing any of these things… recently…

However this wasn’t the reason for the concerted looks. Nope, instead I was once again privy to the plight that is the ‘invisible illness’. That blind assumption that the normal looking 29 year old, is in fact ‘normal’. (Please keep the jokes in your comments to a minimum)

As someone with Ankylosing Spondylitis (AS), I am often akin to ‘bad’ days. This (fortunately) was not one of them. Nor however was it one of those rare days when I am pain free. It was just an average day for an average spondy.

About 10 minutes before the collective glare we had stopped at one of the busier stations along my route. Joining the normal melee of commuters was an elderly couple with accompanying suitcases. After 5 minutes a gentleman a row down from where I was sitting – very chivalrously – offered his seat to the elderly lady, as the train had become very full with only standing room left.

Angry Birds Star Wars

Now by this point in the journey I was away in my own little world, catching up on the news and my emails (read: playing angry birds) before my obligatory train ride nap, which I usually have to endure as part of my daily journey. I know, such injustice.

What I hadn’t noticed was the elderly gentleman was still standing. It was also quite apparent that his mobility was very poor, and he was clearly in need of a seat.

Being thoughtful, a fellow standing passenger shouted (loudly) down the carriage, “Can someone offer this gentleman a seat please?!”. A reasonable request, and she did say “please”. Even if her tone was the one she uses to tell her children off (assuming she is a mother of course).

This was the point at which I looked up to find people staring at me.

Maybe they weren’t just looking at me, but it looked as if they were. After a rather uncomfortable silence, someone gave into the social peer pressure and offered up their seat. Problem solved.

Some passengers at least had assumed I would do the good deed, being the youngest on my section of the carriage by a good decade. Was this wrong of them, most likely. Was it wrong of me to assume that I was worse off than the others, also most likely.

If someone had asked me directly to give up my seat that day I’m still not sure what I would have done. I’d like to think I would have. After all, he was clearly more disabled than I. But the atmosphere left me feeling very defensive and vulnerable. So maybe I would have tried to explain that I would rather not, and that I in fact have AS, a chronic degenerative condition. Maybe that would have helped spread awareness? Maybe not.

The Invisible Illness strikes again

That sounds like a really bad horror movie doesn’t it? Anyway…

Have you experienced something like this before? What did you do? What would you have done in my situation? Was I wrong to assume that others were more able to offer their seat up? After all, I was feeling hostile towards those that were doing the same towards me.

Is there ever a right way to approach “The Curse of the Invisible Illness” (Yet another bad horror movie title)? Should we take the moral high ground? Or perhaps take the opportunity to educate people about AS, even if it involves confrontation?

Or maybe, we should do the traditional English thing:

Keep Calm and Carry On

Packed Train

Image credit: popsci.com

13 responses to “Angry Birds, Bad Horror Movies and Invisible Illness

  1. When travelling on public transport, I usually listen to music (to relax), so I would probably not have heard the call ;-) But it depends on the situation really (how far do I still have to travel? what’s on my schedule for the rest of the day?
    I’ve also had it happen to me on a bad day (using crutch) on a full bus, and nobody gave up their seat :-/
    I understand what you say about the ‘curse of the invisible illness’ though…

  2. This is a common problem. In the past I’ve spent uncomfortable painful train rides standing, too. Now I walk with a cane I’m no longer invisible and I ask old men to give me a seat. Revenge is sweet.

  3. I’ve been having similar lately. I am in my mid 30’s and a friend who is in her 50’s has a “bad back” – she constantly goes on and on about it. Well when we group together to go out as a group, we car pool for events, and she always insists on taking her car because it has enough cushion so it wont hurt her back. despite her having gone in my friends van. she today tried to get me to go with her in her veh. Our day involves many stops and many times getting in and out of veh. My Kia soul is perfect hight for me to just step out of veh without having to pull myself up. Somedays i can do cars with others, but other days I cant and I insist on driving those days. Today is a bad day. and so the battle begins again. She has a bad back and so she assumes that its just my back. its not. its the SI joint the knees, and now today the eyes too. I try not to call attention to my plight day after day. And I try to be accomodating, but i think with this, I almost dont want to give in just because of how nuts she is about her back pain. (which i believe is worse because of anxiety disorder and her insistance on focusing on her pain all the time)

  4. This is always going to be a problem for us people with AS and one I have faced many times .not so much these days as I am getting on myself now well the younger end of getting at age 61 . But I started with AS at the age of 17 but did not know that until the age of 26 . By then AS had well and truly set in and it was too late to save me from a life of pain. So being a young man who could not move very well and slightly stooped a lot more now had all kind of thing said to me . and still do not so much as when I was younger but it still goes no . Only last week I was sitting on a bus not many people on the bus plenty of room but the way I had anything said to me was because I was sitting in the front seats that are for the disabled people which by the right’s I was entitled to sit . So these elderly couple yes older than me and they wished to sit together the man looked at me then touch my leg with is cane so I said yes .He said these seats are for the elderly and people with disabilities I said I know that’s why I’m sat here you don’t look elderly or disabled you can sit anywhere on this bus. I could but this sign here says this seat is for the elderly and people with disabilities He then had a word with the driver he told the man in question sorry mate he as a disabled bus card he is entitled to sit there .I do so get fed up with keep having to explain myself to people all the time . The problem is I look fine when sat down but stood up it’s a different matter.

  5. I think anyone with AS, or any other chronic invisible illness, can relate to this story. I know I definitely can. I do not think I would have told the people on the train, about my AS & other medical problems, because I do not think anyone would care to listen to me make an excuse, as to why I did not want to give up my seat. I more likely would have just given up my seat. There is no right or wrong, though. No one is obligated to give up their seat to anyone, it’s a choice. It is unfair & sad, that by having an invisible illness(es), there are so many simple things we have to deal with, choices we have to make, added stress & aggravation, that others never have to think about, at all. Thank you, for writing this throught provoking blog post. It reminds me, how much AS & other chronic invisible illnesses affect our everyday life, not just physically, emotionally & psychologically, but also in all the little things, that happen each day, that make us feel different, hurt, ashamed, & invisible.

  6. This is another great topic Ricky, I have had similar experience, once on a business trip down to London, I had to take the tube to and from a hotel and a clients workplace. I’m from ‘up north’ and not used to the sheer insanity of rush-hour on the tube in London. Its crazy.
    On my first day of the trip i had spent nearly 4 hours sitting on a train from Newcastle to London. Sitting for so long in the morning in 1 position with my back aching because of the very poorly designed seats (no lumbar support, awful – I hate, hate poorly designed seats). Then I had to navigate 3 stops on the tube with my luggage (case on wheels with clothes for 5 days in a hotel plus laptop bag) battling through the masses with my head down staring at my london underground app on my phone. By the 1st stop I was knackered, hurting and stressed. My back, shoulders, hips – all aching and stiff. The next train was pretty full, but there was 1 empty seat by the door. It was marked for elderly and disabled people. I took it. And even though I felt I should take it, I did feel really, really self-conscious about it, thinking people were looking at me. To be honest, I don’t know if people were looking at me, because I didn’t look up. I felt horrible.
    What am I supposed to do? Im not sure. Accept the fact that people don’t know you have a painful, chronic condition? And stand aside and leave the seat labelled “elderly and disabled” empty? Or stand your ground and dismiss the angry stares.
    I try to live with A.S. by accepting it, and making room for it in my life, which includes accepting the fact that 99% of the people I encounter in my life (eg people on the bus) will never know the pain I often feel just from having to stand in a moving bus, as it swings round corners and me and my laptop bag having to strain those back and shoulder muscles which are aching and stiff. Sometimes I feel like my bones are aching on the inside, and just standing is painful. But on the outside, I just look like an ordinary 31 year old (although my nickname at work is Junior because apparently I look really young!), with perhaps a grumpy expression on my face, sitting in a seat labelled “elderly and disabled”. How dare he!
    Its really easy to feel resentful of people for that. But I try not to. I try to find a middle ground in most situations – I will take up the last seat on the bus or train, but I will always do a mental triage, and make sure I make the effort to scan the bus for other people who obviously look like they might want it like the elderly, and if there are people standing near me I might ask loudly and politely ‘do you mind if I take this seat’? People will always say yes, and I find that diffuses the social awkwardness. Sometimes I even try to emphasise my pain by groaning when I sit down or rubbing my back. I feel a bit silly doing that but at least people might realise maybe I do have a greater need to sit down.
    Sorry for the uuber-long comment but you’ve touched on a topic I think about a lot! Thanks Ricky

  7. Thank yo all for your comments so far. Sorry I haven’t responded to them all individually.

    When I wrote this post, I knew it would resonate with many. Part of the reason I decided to write about that particular incident. What is intriguing is the way we have all found our own way of dealing with this – which so far – are all pretty similar.

    Thank you again for taking the time to comment. And I am glad the “normal” jokes were kept to a minimum ;).

  8. Another great post Ricky. I had similar thoughts based on my own train journey just this morning. Thanks for sharing. People will always assume that ‘what you see is always what you get’. Together though we will all raise awareness about AS, in the hope that we may increase awareness/knowledge of this often invisible condition.

  9. BEEN THERE. I don’t feel guilty. I’m not required to disclose my medical information with anyone (up to snuff on my HIPAA laws), and I feel it’s pretty obvious once I stand up that they have misjudged me just because I have beautiful wrinkle-free skin.

  10. Yes! I was 7 months pregnant and we were out for a day of shopping. I have a disabled parking placard and found a spot up close to the store. As I gingerly slid out of the driver’s seat and waited for my mom to come around to my side of the car, some lady screamed at me in fury that, “Pregnancy isn’t a disabling condition.” My mother turned red and stormed over to where the lady was and proceeded to enlighten the lady of my “invisible condition.” When I came face to face with her, I just smiled and said, “Listen, I’d be happy to park on the other side of the parking lot in exchange for good health. Would you like to trade?”
    She never apologized. I should probably let go of that grudge since it has been about 16 years, lol. I’m always getting stares or people checking to see if I have a placard. Once, I had a lady criticize me for using the disabled bathroom stall. So many judgy people out there.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s