The Ugly Truth About Disability

August has always been a pretty non-month for me; Nothing much goes on, summer hype is winding down and the I find the month is generally nothing to write home about. But this August was very different. Within the four weeks of August, our family had 3 very, very close family friends in crisis. This month, I became truly aware of what a fine line we all walk down every single day: Between good health and disability, life and death.

E., 62

A single mother, E has worked her entire life and been in good health. Currently working for a human rights organisation, she’s now in the final years of her working life and gearing up to enjoy what retirement has to offer. Three years ago, the doctors found a large benign tumour in her abdomen that needed major surgery to remove. Since the surgery, she has suffered from chronic adhesions (scarring that causes blockages) that leave her in serious pain, needing treatment and multiple hospital stays each year. E., like 1 in 5 of the UK, now has longstanding, limiting disability or illness. She has used up all her sick days and holiday with hospital stays, so now her boss said they have to begin docking her pay. She can’t afford to lose the money, so she’s ignoring doctor’s ordered bed rest and going back to work.

S., 28

Growing up S. spent most of his time at our house, so is like a brother to me. He lives in a seaside town and runs a holidays lettings company there. After work, he and some friends headed to the beach. He jumped into the water from the same spot he had been using for the last 28 years. The same spot everyone uses. But this time, something went wrong. His friends called an ambulance and he was airlifted to a major trauma centre. Surgeons did everything they could but the damage was irreparable. S. would be paralysed from the chest down for the rest of his life. S. is tragically now part of the 30% of the population who will become disabled before the age of 50.

J., 52

J., is a close family friend we have known since before I was born. He worked as a consultant and in his free time was an avid marathon runner, taking part in 3-4 each year. Two years ago, he and his family began noticing odd symptoms. He saw various consultants and after a few weeks of investigations, he received a one, two punch diagnosis: Parkinson’s disease and cancer. His prognosis was terminal. Like 75% of disabled people, J. received more than one diagnosis/impairment. The combined diagnosis meant his decline was rapid. Sadly, last Thursday in a hospice surrounded by his wife and children, he passed away.

Like for E., S., and J., most disability will be acquired at some stage in life. Less than 20% of the disabled population are born with their disability. Each of them is a person with a full, happy life. They have hobbies, passions, dreams. They are relied upon by their partners and families for emotional, physical and/or financial support. But for each one of them, their life has taken a turn that they never expected or could have avoided.

The cold hard truth is that we are all staring down the barrel of a gun. At any moment, our health – or our life – could be taken away from us. Disability can strike anyone, at any time and your life will change beyond what you can imagine. August has been a trying and emotional month for my family, our friends and their families.  So we ask you, for people like me, E, J, S: Stand up for disability rights, while you still can.


3 Tips for Travelling with a Disability

Despite having a disability my whole life, mobility has only begun having a significant and unavoidable impact on my life in the last couple of years. This made my recent jaunt to France a totally different experience than any holidays I have had before. Normally I would be off exploring first thing in the morning, finding hidden treasures around the area and really getting a feel for it like a local. This time I could barely manage morning outings to get coffee and pain aux raisin. Fortunately, I was still able to have a wonderful holiday but there are some simple steps I will be taking on every future holiday.


Fail To Prepare, Prepare To Fail

The world is not made for people with disabilities. Despite the many regulations now stipulating accessible facilities, things change slowly. Most places in London are not accessible, so it’s unlikely that a little holiday destination will have got the memo (or have enough disabled visitors to “justify” the changes). So what can you do? Make a list of your requirements – whether that’s accessible bathrooms, no steps/stairs, wet room required etc. – and get searching. There are some wonderful tools where you can plan fully accessible holidays easily in one place (list below). If you are keen to do it yourself and really get a feel for your holiday, then be prepared to contact the various companies/venues/hotels that you are interested in visiting. Despite information on websites, I have found these can very often be out of date, so it’s best not to rely on them entirely. I find emailing in advance is the best policy. Emailing is great because if there is a language barrier then I can use google translate ahead of time, plus it ensures that you have an email documenting your queries should you ever need it!

Accessible Holiday Search Website I personally have not used these so I would love to hear from any of you that have done!  

Enable Holidays

Can Be Done

Disabled Holidays 4 U

Keep Your Chin Up!

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Whether it’s a lift being ‘out of order’ or issues with a pre-arranged support, things will not always go to plan no matter how much you plan ahead. Add the fact you are in an unfamiliar setting, possibly not speaking the language, it can be frustrating and very disheartening when things go wrong. You can’t plan for everything but keeping a positive attitude when these things happen is key. I don’t mean to sound patronising. I say that from a place of genuine experience. When I am in a lot of pain, if the smallest things go wrong it can really impact my mood. When I went on holiday I decided that I would not let this happen and chose to stay positive when things went wrong. I still got annoyed, but instead of letting it bubble up and bring down my whole day, I brushed it off and tried to think about a resolution/workaround!

Get Travel Insurance

Fingers crossed that by following the previous steps you can avoid any situations that might cause you any problems, but you can’t plan against everything. Having good travel insurance – specifically for those with pre-existing conditions is best – will protect you should the worst happen whilst you are away from home. Always check out MoneySavingExpert so you can find the best deal. I managed to get full cover insurance for £16 this time, which allowed me to rest easy whilst on holiday. No one should have to worry about finances when they are in a hospital!


Disability is a spectrum of needs and abilities, but these tricks should be suitably helpful for everyone. But figure out what works for you and don’t be afraid think outside the box. If you have any clever tips and tricks that you use when travelling, I would love to hear from you!

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‘Los Angeles’ My Little Box – Review

My favourite subscription box arrived on the day I left on holiday so I couldn’t collect until a couple of days ago. So do excuse this rather late in the month post!

Yet again, My Little Box has absolutely nailed it. This month’s box was themed ‘Los Angeles’. As soon as opening you see the lovely pink and teal pale hues burst out. The detailed design of these wonderful little boxes constantly surprises me. Even down to the product description leaflets, it all has a unique design.  I realise sexy package design is a lame thing to get excited about but after 7 years in marketing, I have seen enough lacklustre design to last a lifetime. Good design *should* be appreciated!



Full to the brim of wanderlust-inducing products, this is my favourite MLB that I have received so far. I wish I had received it before I went on French travels, that little tote would have been a great market day bag. I think my favourite item in the bag though is the Burt’s Bees cleanser. It smells incredible and leaves my skin feeling fresh, but not totally dry like other cleansers I’ve used. I actually like it so much that I ordered more and I’m going to use that as my nightly cleanser!


This month, my box included:

  • ‘Take me away’ Tote
  • Beaded Tassel Bracelet
  • Los Angeles Illustrated Map
  • Burt’s Bees ‘Soap Bark & Chamomile’ Cleanser
  • Palmers Coconut oil body lotion
  • MLB Coco Sunrise Hair Oil
  • Stickers!

I have another very new and exci-tea-ng subscription box that I will be sharing with you soon. Tune in for that post in the next couple of weeks!

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Just a little bit longer…

Hey guys,

This is just a quick note to say I’m sorry for the lack of posting recently. I’ve been really unwell and balancing the blog, university and other commitments has been pretty overwhelming. Thankfully the dust is settling a bit and I’m getting back on track. I have been spending this time planning and thinking about this little passion project of mine as well. I have some exciting things upcoming that I think you will enjoy, if you’re willing to forgive a couple of weeks break 🙂

Check in next week for a new guest blog!

All the best,

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