She hides it from almost everyone.

Today we are hearing from a brave lady who, despite the effects of her disability, doesn’t let it¬†stop her from living her life and working her dream job in the city.¬†She wishes to remain anonymous, but is sharing such details about her disability is a huge step to help open the dialogue¬†about hidden disabilities. Thank you contributor!

Q: Can you tell me about your disability? 

When I was born I contracted septicaemia. This damaged my left hip and caused other complications as I was growing up. I had lots of surgery as a teenager. When I was 21, my hip became arthritic and I had a total hip replacement – if I had ¬£1 for every time someone said “oh you’re young to have a hip replacement” I would be able to retire! And now¬†I am nearing the time when I will need this replacement to be replaced! Additionally, as a result of the complications, my lower spine is disintegrating – there¬†is nothing that can be done about this. The most recent issue for me is nerve damage in my left foot, creating a loss of feeling in it. This has meant that I have been working at home for the last three months, as I cannot travel on public transport.

Q: What is your typical journey like (prior to the badge)?

My typical journey would be very stressful, so I avoid travelling at peak times when possible. People have pushed me out the way to get to a¬†seat, and¬†pregnant women ask me to give up my seat (which I would do). At really bad times, I have just stopped and tried to work out whether I could get someone to come and pick me up from Central London but my family works and they support me a lot anyway. Sometimes I get to travel with my husband which is great. Even if I don’t get a seat, he helps me and always tries to stop people pushing me about. This year the traveling got too much for me, hence working at home. It’s really important for me to be able to keep working.

Q: What happens if you don’t get a seat? How does this impact your day?

It’s just¬†about getting through the day, dealing with tiredness, stress and pain. It gets you¬†pretty low when every day is¬†like this. I also¬†walk slowly and people are not shy about being impatient and pushing me out of the way. It doesn’t just impact on my day. It impacts on my husband’s too as he has to look after me, drive me around and look after himself.

Q: 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?

None. I work very hard to make sure that people can’t tell I have a disability. So I check in with people to make sure that I am not limping, for example.

Q: How do you feel about the badge trial? 

I think it’s fab idea. I emailed TfL some years ago to ask if they would do this, or where they planning to do this. Their answer was ‘no’ on both counts, so to see a complete turnaround is great. Personally, I am a little apprehensive about wearing the badge as I am extremely private about my disability.

Q: How do you feel living in London with a disability?

I have so many reasonable adjustments in my life that it wouldn’t matter where I live, they would be the same. I have used public transport much more than ever since I moved here 13 years ago. For a long while I avoided working in Central London but I had no choice when my dream job came up at London Bridge. This year I have to come to terms with the fact that my¬†body will not always do what I want it do, and to come up with different ways of doing things.

Q: What do you think would most surprise those without a disability about the way yours affects you?

That I work extremely hard for people not to know that I have a disability. It is a constant stress for me that people might find out. Only my immediate family, my husband, my best friend, and my manager at work know. Culturally for me, there are still some disgusting attitudes to disability. I have heard people within my outer social circle describe disability as a “defect”. I won’t expose myself to that in my own home or socially. This is what I like about the trial – I can do my bit to try and raise / change people’s awareness but with some relative anonymity. Wearing the badge, for me, is a huge step but I don’t think I could go any further than that¬†right now.

A huge thank you to this brave contributor! A brief snapshot into the daily commute of someone with a hidden disability and the struggles she goes through.

Check back next Friday for another profile.

Lily x


I’m hiding Ehlers-Danlos Syndrome

Before I share other people’s stories, I wanted to kick things off by sharing my own.

Thanks in advance for taking the time to read it!

Q: How old are you? 

The grand old age of 24.

Q: Can you tell me about your disability? 

I have something called Ehlers-Danlos Syndrome type III. EDS is caused by a fault in the genes that causes connective tissue to be weakened. It’s pretty rare with only 1 in 5,000 people having the condition. EDS has a really wide range of symptoms and each person is affected in a different way. For me personally it causes my joints to be very unstable, causing frequent dislocations (as many as 5-10 each day), chronic pain, dizziness/fainting and exhaustion.

Q: What is your typical journey like (prior to the badge)? 

Like most Londoners, I normally have to get to work for 9am which means I have to travel at the peak of rush hour. I live on the district line which very often has severe delays, leaving every train absolutely packed and really hot. I usually squeeze onto a train, mind the closing doors and hope for the best like everyone else; in the past few years I’ve lived in London I’ve only managed to get a seat during my commute a handful of times. On even rarer occasions the train will empty at Earl’s Court and I can nab a seat there, but it’s not very common.

Q: What happens if you don’t get a seat? How does this impact your day?¬†

On a good day if I don’t get a seat, it might mean I need to take some extra painkillers throughout the day. On a bad day, the¬†additional 45 minutes of standing¬†can¬†lead to¬†constant pain at a minimum, dislocation of my hip later in the day, and often missing the next day or two of work (or having to spend my weekend in bed).¬†

On one occasion¬†‚Äď naturally we were packed like sardines in the carriage ‚Äď the train suddenly made¬†a hard stop. Everyone was jolted around and some people fell over. Unfortunately, I wasn’t able to get my arm free quick enough and I¬†dislocated my shoulder. Luckily it went back in smoothly, but it‚Äôs a pretty horrible way to start the day.

Q: 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? 

Yes and no. Outwardly I look healthy, but I do have to use a walking stick often. I have a pretty bulky forearm crutch too, so it’s quite in-your-face. Some people are so lovely and give up their seat as soon as they see the walking stick, but in a busy carriage sometimes they can’t see it. I would say it helps get a seat about 50% of the time, as opposed to not having the stick.

Sadly, even with a visual cue like my walking stick, some¬†people do their very best to avoid giving up their seat.¬†I think the most memorable was when I was standing in front of this lady¬†who¬†looked at me up and down, then closed her eyes and started “snoring”. Brutal!

Q: How do you feel about the badge trial?

I have been pretty vocal on social media about needing some kind of ‘disability on board’ badge. With pregnant women and the elderly, there is an obvious visual cue that people can look for. With hidden disabilities, it’s impossible to tell and sadly walking aids aren’t enough sometimes.¬†London’s public transport can be a crazy¬†place, so¬†having something that is ‘official’ and that people accept without much hesitation is a HUGE relief for me.

Something I have heard a lot is “Why don’t you just ask for a seat?” My answer to this is a challenge; every trip you make on public transport for the next week,¬†walk up to someone and ask them for their seat. You‚Äôll likely get a lot of people pretending they didn’t hear you, some pulling faces like you’ve insulted their grandmother, and then a handful saying yes with no qualms.¬†Now try doing this multiple times each day¬†– it‚Äôs exhausting.

Q: How do you feel living in London with a disability? 

London¬†is an incredible city with endless things to do and see. When you have a disability your life is¬†not always in your control. When the infrastructure we have in place is running smoothly London is one place that I feel you get some of that choice and control back. When it‚Äôs not running smoothly (or at all) it can suddenly feel like you’re stranded on a desert island with nothing but an oyster card.

Q: What do you think would most surprise those without a disability about the way yours affects you? 

A: The symbol for Ehlers-Danlos is a zebra, relating to the medical saying “when you hear the sound of hooves, think horses, not zebras”. But sometimes those hooves¬†are¬†zebras! Ehlers-Danlos is quite rare, so¬†doctors often¬†don’t recognise they are seeing it and therefore sufferers tend to have long and difficult journeys to diagnosis.¬†I spent almost 15 years being told by doctors that there was nothing wrong with me. Instead I was having¬†‘severe growing pains’ or was just¬†‘very flexible’. It went on for so long that I didn’t even trust myself anymore and questioned every twinge of pain or bizarre clunking in my shoulder, assuming everyone else went through it too.¬†

I think that may surprise people to know that I’m not actually ‘disabled’ in my head. In my mind I’m the active person I want to be, but it’s my body that¬†has to remind me that I’m not and I do have some limitations.¬†I think that may be the¬†most surprising thing people¬†don‚Äôt know¬†about being ‚Äėyoung‚Äô and having a disability that affects you in the ways EDS does. In your twenties¬†you are expected¬†to work exceptionally hard, build the foundations of your career and have lots of nights out and fun along the way. In contrast, when¬†you have EDS it’s all about nights in, trying to avoid dislocations and pain management. As like most EDS sufferers, I can definitely say my¬†joints go out more than I do!¬†

I hope you found this interesting and have maybe even learned a little something after peeking into my daily commute.

Check back next week for another Q&A! I am publishing them every Friday moving forward. If you or someone you know would be interested in sharing your story, please get in touch.

Lily x

Hello, world.

Inspired by the TFL Blue badge trial, I have created this blog in the hope of raising awareness of the wide range of invisible disabilities that people can have and the impact that something as seemingly simple as offering us a seat can make.

I have an invisible disability myself – Ehlers-Danlos Syndrome – and I feel passionately about raising awareness of them and the importance that changes, like the blue badge, can make in peoples lives.

– Lily