Today we are hearing from Jenny, who is one of over 10 million Britons suffering from chronic pain on a daily basis. She gives us a unique insight into the life of someone who didn’t suffer from their disability until fairly recently and the long-term prognosis is still an unknown for her.
How old are you? I am 29
Can you tell me about your disability?
I have a chronic knee injury. I injured my knee over a year and a half ago. It makes standing for more than a few mins and walking hard and painful. I have regular physiotherapy sessions and do up to and hour of exercises at home every day to strengthen my knee and leg muscles, but have had very little improvement. I don’t know when (or if) I am going to get better.
What is your typical journey like (prior to the badge)?
I commute for an hour and a half – two hours from one side of London to the other. I changed my hours to get to work 30 mins earlier to get a seat in the morning and I take a longer route, which adds 30 mins – one hour (on a GOOD day) to my hour and a half journey to get a seat on the way home. Even if I get a seat there is a lot of walking and sometime stairs between trains. Walking downhill is particularly hard so the ramps at my nearest station are even worse than stairs for me.
What happens if you don’t get a seat? How does this impact your day?
I try and stand on one leg as much as possible (even though my physiotherapist tells me not to as I need to build up the muscles in my knee). Every time I stand for more than a few minutes my knee gets worse. It gets painful at the time and for around a week after it will be painful and swollen meaning it’s even harder to walk or stand. It will mean I can barely walk for at least a few days after and every step will hurt. If there is space I sit on the floor but there’s often not space to even do that. I often get home on the verge of tears.
Just two weeks ago my train on the way home was delayed and I didn’t get a seat. I tried to stand on one leg as much as possible and I was surrounded by people watching me struggle with tears streaming down my face but no one offered any help or asked if I was ok. When there was space I sat on the floor. My knee is still sore from this incident.
Are there any visual cues that would signal you need a seat (prior to the badge)? i.e. walking stick, crutches. How successful is this?
No visual clues. Unless they see me trying to stand on one leg, but this doesn’t help. A few times I had blue tape on my knee and up my leg and this helped get me a seat once but that’s it.
How do you feel about the badge trial?
I’m so happy it’s happening and I don’t know why it doesn’t already exist. I also don’t know why it is just a trial – what if they decide that people are not responsive; then what? Are we supposed to go back to life before the badge? I think it just needs marketing to raise awareness. Personally the badge has been a huge relief and a life-saver for me. I feel more confident asking for a seat and showing my badge than before when I looked like there was nothing wrong with me. I was worried people would question if the badge is real or why I need a seat but so far people have jumped up no questions asked.
A few times I’ve asked for a seat showing my badge and other times people have just given me one – all in rush hour. It’s also connected me to other people going through similar struggles and reminds me I’m not alone in my suffering! It’s also raised my awareness of other conditions and how they impact people.
How do you feel living in London with a disability?
Living in London with a disability can be frustrating, isolating and scary. There are so many fun things to do in London – galleries, exhibitions, festivals, concerts, and exploring new areas; all of which require a lot of standing and walking. So it’s frustrating that I can’t do everything I’d like. It can also be scary. Like I can’t just go out with my friends, I have to think about if there will be a seat there and if there’s not then I won’t go. It can also feel very isolating when you’re struggling to walk and everyone is rushing past you and bashing you around.
What do you think would most surprise those without a disability about the way yours affects you?
Just how life changing it is and how seemingly simple things I would’ve taken for granted are now hard or impossible. Even things like queuing are hard. Also the fact that when I stand for a long time it aggravates my condition and it feels like I’m going round in circles or being able to walk a bit more then standing and making it worse. They say muscle injuries are worse than broken bones as they take much much longer to heal.
A lot of emotions that I think everyone can relate to in here. Thanks for sharing your story, Jenny.
Check back next week when we will step into Tina’s shoes for her daily commute.