“Please Offer Me a Seat” Badge & Card

My name is Annie, and I have Fibromyalgia. There are no outward symptoms, but living with Fibromyalgia means that I have widespread pain in my muscles and joints every day. It also means that even on a ‘good’ day, I’m tired when I wake up. ‘Bad’ days mean getting out of bed is not possible, either due to the pain, the fatigue, or both. There’s no telling until I wake up what kind of day it is going to be, and a flare-up can happen at any time, no matter how careful I am.

All of what I listed above can be made worse by the journey to work. When I have to stand, being bumped by other passengers is painful. Gripping on to a handrail can mean that my hand will be unable to hold a pen when I get into the office unless I run it under cold water or put an ice pack on it. Post-Covid everyone knows about brain fog, but Fibro-Fog was around long before that. Pain increases the Fibro-fog, so I second guess almost every decision, every email, to be sure I haven’t forgotten anything important.

All of this is worse going home. Any day at work is tiring, so any symptoms I have are intensified. Not knowing if I’ll get a seat means I tend to work a longer day, as I leave home earlier and leave the office later just to try get a seat. Sitting down means I'm able to relieve the pain in the soles of my feet by lifting them off of the ground, or I'm able to roll my shoulders to relieve tension. It also means I've less chance of being bumped into, which ultimately results in less pain. Having a seat offered to me means a better chance of relaxing at home, getting a better nights’ sleep and the chance of a ‘good’ day when I wake up.

My name is Emily and I’m 26 years old. I live with Psoriatic Arthritis, Fibromyalgia and Migraine, among other things. I was diagnosed with Arthritis at 18 months old and have slowly built up a pretty impressive collection of diagnoses since then. Having dealt with chronic pain and fatigue conditions all of my life, I’ve learned to be a great planner—making my way around Dublin with the least amount of walking is a necessity for me on my bad days, but a tonne of forethought and a great planning can’t help me when there are no seats left on the bus and I’m too embarrassed to ask someone to give up theirs. I look young and able-bodied on the outside so people make their assumptions—I don’t blame them, but it can be so difficult and stressful to speak up for myself when I’m just extremely tired and trying to get home from a long day of college.

I’ve had a lot of experiences with people's harsh sighs and judgemental stares for not immediately jumping up when another person in need of a seat gets on the bus. It may not look like it, but most days I’m as able to stand as an elderly lady with a cane. It’s dangerous for me, I could fall, when people bump into me, it’s incredibly painful and standing makes my joints hurt for hours, sometimes days afterward. There have been so many times when I have given up my seat on the bus for someone who is visibly disabled or elderly because no one else has, because I know their pain, I know how it feels to struggle and I just can’t bear to leave anyone standing who may have difficulty, when I know what’s awaiting them later if they do.

I'm Lorraine, and on the 1st of July 2016 I had a stroke. On July 2nd 2016, a CT scan/MRI identified a brain tumour. Since then, my body has been weak and the right side of my face has dropped and became numb.

I have been receiving rehabilitation over the past 6 years for expressive aphasia, auditory processing and motor/sensory skills, as they are reduced on the right side of my body. I also have difficulties in finding words, reduced verbal fluency and a slower auditory processing speed.

I regularly experience fatigue making some tasks difficult to complete. I have a tremor in my hands and my balance is affected causing unsteady walking.

Using public transport can be difficult sometimes as I tend to experience a lot of confusion and forgetfulness. Every place to insert the ‘free travel’ Public Services Card is different, so when traveling from the country on the Bus Eireann bus to Dublin Bus and the Luas, I forget the way to use the swipe or vending machine. This causes a lot of anxiety even before I get on and the noise levels of the bus and traffic become overwhelming.

When I sit on the nearest seat (mostly for elderly people with mobile problems or wheelchair users), I feel people might judge me. I have no appearance of having any invalidity and I believe they might think ‘you shouldn’t be sitting in the disability seat’.

When there are no seats, I am not assertive enough to ask anyone for a seat, so if I had to stand for long periods, I might get dizzy as I experience vertigo. If I need to hold on the bus/Luas handrails, I find this challenging as I have numbness in my right hand. I also do not want to fall when the bus/Luas suddenly hits the hard brakes.

I am quite unsteady when I am on a moving bus and when it accelerates. I find it very difficult to balance when on the bus and when exiting the bus/Luas.

Due to my dysphasia, I find it hard to find words and explain to the bus driver where I am going. Even just asking simple questions like “where is the bus going?” or most importantly “can I please have a seat?” can be difficult. I believe wearing a badge will be more helpful when asking a person If I could kindly use their seat.