Lauren’s Story || Guest Profile

This week we hear from Lauren from St Louis, Missouri, USA. My first international guest post, Lauren has shared her journey with a chronic illness that began in her teens. I really hope you enjoy reading it (I certainly did!)

Continue reading Lauren’s Story || Guest Profile


I Spoke To Guardian About Disability Benefit Cuts

A little while ago I¬†began speaking with the Guadian about the difficulties I was facing due to the government cuts to PIP. Along with my journey, I learned that the benefits system is set up like a house of cards; If you don’t get PIP, you are locked out of other benefits like income support and universal credit. But with the surge in DWP decisions being overturned (some quote as high as 70% of decisions are being overturned) it’s leaving disabled students, like me, unable to access the support needed to continue our education.

Read here: Disabled Students fear for their future as independence payments cut

Continue reading I Spoke To Guardian About Disability Benefit Cuts

An open, honest account of life with Crohn’s Disease // Guest Profile

This week we have a guest profile from the lovely Lisa! She is sharing her journey with Crohn’s disease¬†today. It’s honest, open and it’s certainly not sugar-coated.¬†For those reasons, it’s one of my favourites to date. I hope you enjoy as much as I have!

Q. Tell us little about yourself! Do you work, if so what do you do? 

My name is Lisa and I’m 30 years old. I used to work in a fandom themed retail company but I’m currently out of work while recovering from a Crohn’s flare up and an abdominal abscess. Currently working on writing, got a blog but I also write short stories and poetry. I like a lot of geeky stuff, read a lot and watch cult films/TV.¬†

Q. Can you tell me about your condition?

I’ve been living with Crohn’s disease for a few years now and it has completely changed my life.¬†Crohn’s is an autoimmune disease that causes inflammation of the digestive system. It can occur anywhere in the digestive system from the mouth to the butt. It can cause:

  • Damage to digestive system resulting in chronic pain
  • Narrowing of the bowel meaning that food can not travel efficiently or be absorbed by body
  • Fistulas (tunnels/channels) through the body from the bowel to other organs or to the skin
  • Abscesses and infections

There is no cure and no concrete answer to what causes it. It¬†affects more women globally than¬†men, usually presenting between the ages of 16-30.¬†There is no set treatment for Crohn’s, but typical treatment¬†centres around easing pain and the symptoms of the condition with things like include diet changes, pain management, steroids and surgery.¬†Crohn’s can have¬†active and inactive periods,¬†remission in between¬†flare ups.¬†There is evidence to suggest that Crohn’s can be treated with marijuana, but not enough medical studies have been carried out just yet.¬†¬†Symptoms I have personal suffered from related to my Crohn’s:

  • Blood in your stools
  • Night sweats
  • Insomnia¬†
  • Extreme fatigue
  • Diarrhoea¬†
  • Constipation¬†
  • Vomiting
  • Depression
  • Abdominal pain
  • Muscle pain
  • Extreme weight loss
  • Weight gain
  • Hair loss
  • Dehydration¬†
  • Dry skin¬†
  • Canker sores
  • Mouth ulcers¬†
  • Oral thrush
  • Acid reflux¬†

Q. How does your Crohn’s disease affect you day to day?¬†

Warning: Parts of this will be kinda gross! 

I’m recovering from having a abdominal abscess so I’m currently off work.¬†Crohn’s now pretty much affects my entire day. I sleep on a towel in bed. At first it was because I had times of extreme diarrhoea and was worried that I would not be able to control my bowels. But now it is because I have a bag attached to my abdomen (called Bob for discretion). ¬†I live in fear of leaks! It’s not common but it can happen. It’s easy to detect when you’re awake but can happen when you’re asleep and you wake up in a mess. I sleep on my back where I once used to sleep in my side as I’m, again, worried about the bag.¬†

Once awake and the bag is emptied and any meds taken its time for food!¬†It’s a bit of a minefield because each person has different reactions to different foods. I can’t tolerate most fruit and veg so take a multi-vitamin everyday. Luckily I can eat dairy and gluten but I can’t eat seeds, pulses, nuts and some herbs/spices.¬†During in a flare up I’ll stick to rice and protein shakes as they are soft on my system. Eating out can sometimes feel like an ordeal I can’t be bothered with. When I was on holiday in America I had no problem having things removed from a dish and finding out ingredients. In complete contrast, I find ordering in the UK frustrating. I get a lot of ‘it just comes like that’ and ‘it’s already pre-made’ or ‘we can’t swap that out for that’.¬†

Photos show the changes Lisa has gone through since diagnosis

When I shower/bath I cover my stoma ¬†with a sandwich bag and waterproof surgical tape because the medical equivalent are expensive. If I’m going some where I might not be able to get to a toilet, I’ll tape a sanitary towel over the stoma to bag connection. I’m constantly looking out for smells or¬†leaks. Again, it’s rare to leak but it’s always on my mind. It’s become quite an obsession!¬†

I don’t go out lot because I worry about when I’ll eat, when I’ll empty Bob, the smell, the leaks and I’m always a little tired.¬†After my last abscess, I lost some of my hair due to weight loss and malnutrition so now have short hair. ¬†I’m constantly in and out of hospital having things poked where you definitely don’t want to be poked and often the doctors aren’t really sure what to do with me.¬†Often I look completely healthy but there’s a huge biological battle going on inside me.¬†

Q. How do you find your condition is impacted, if at all, by living in London?  

The tube is a nightmare. I look well so I feel guilty taking a seat. Also, I worry about rush hour because of the smell, leak and bag situation. Also, toilets are hard to find on the underground. I prefer the bus so I can hop off and find a public loo.

Restaurants are hell. We need more plain food options on menus in fancy restaurants. Just rice and chicken!  Wish Marks & Sparks would do an ultra plain meal deal!  I honestly prefer pubs, theatres, cinemas and clubs but I wish there was more disabled toilets in them. 

Overall we need more education on Crohn’s because explaining it to nearly every new person I meet is a drag. ¬†

Q. What is something that would surprise others to know about your condition?

Periods make a Crohn’s flare up worst! The scene in Alien where the creature burst out of the guys stomach is based on a Crohn’s stomach ache and I can tell you it sums up how it feels pretty well.¬†

Q.What glimpse of wisdom can you share with us?

Talk about your poo! Don’t be ashamed of bloody poop, wind, bloating, poop, diarrhoea, constipation, vomiting or any other body function that seems unusual. Especially your poop. Don’t worry if it’s not “lady like” because treating Crohn’s¬†early can¬†help you avoid future issues.

Thank you, Lisa!¬†A wonderfully open and honest¬†account of her journey with Crohn’s. I firmly believe that it is only through truthful – not sugar-coated – accounts of life with disabilities, like Crohn’s, that the rest of society¬†will ever be able to understand (or come close to it). Screw¬†the stiff upper lip and suffering in silence;¬†honesty and candour are king!

If you, or someone you know/care for, would like to share your story please get in touch.

Until next week!

Lily x

Shona’s Story // Marfan Awareness Month

Hello hello! First month of 2017 has just flown by. Some of you may know that February is Marfan Syndrome awareness month and we are very lucky to have a guest post from the wonderful Shona Louise. Over to you, Shona!

I’m Shona and for over 5 years now I’ve been blogging about beauty and lifestyle topics, in the past year I’ve also talked about disability more as well. Throughout that time though I’ve always talked about my experience with my rare genetic condition Marfan Syndrome as well. I’m not able to continue my education or work because of my health so I spend my time blogging and raising awareness of Marfan, also dedicating my time to working and volunteering with charities.


Marfan Syndrome is a rare genetic disorder that affects the bodies connective tissues. The gene that creates an important protein called fibrillin doesn’t work right and this leads to overgrowth of the bones and tissues being too stretchy. This causes the typical characteristics associated with Marfan such as having long limbs, being tall and slim, having flat feet and a small jaw with crowded teeth. There are also some secondary conditions that it can cause like the curvature of the spine, eye conditions and breastbone deformities. However it is mainly known for the heart complications that it can cause due to the body’s connective tissues being too stretchy. The aorta, the main artery in the heart, has the ability to stretch beyond what it should in those with Marfan Syndrome. This is called an aortic aneurysm and sometimes the aorta can go on to tear or even burst, this is called an aortic dissection and it is a catastrophic and often fatal event that unfortunately took both my Grandad’s and Uncle’s lives. It affects everyone in different ways though, even within families when several people have the condition and there is a 50/50 chance of passing the condition on to any children.

The biggest way that Marfan affects me is the severe chronic pain that it causes me. When I was 16 I had major spinal surgery to correct a curve in my spine but it didn’t go to plan and a year later I needed a second surgery. These surgeries were meant to relieve my back pain but unfortunately it didn’t seem to work and a few months later I found out that I would be needing more surgery, on my hip this time though. At the age of 18 I had my first hip replacement and thankfully that surgery was successful. However a cyst in my spine, in my sacrum to be specific, has left me in such severe pain that I need a powerchair to get around. The cyst is pressing on nerves and eroding away my sacrum, a triangle bone at the bottom of your lower spine. It means i struggle to sit up comfortably for more than half an hour and I can only walk a few metres on crutches, hence why I use wheels to get around. I also suffer with chronic fatigue, which means that even after a full nights sleep I can still be exhausted. In addition I also know that in a few years time I will need major open heart surgery so that plays on my mind a lot.


Most doctors and people that I meet that know about Marfan only know about the heart problems that can result in it so it always surprises people to know how much surgery I’ve needed at a young age and how much pain I’m in as well. People are always surprised at the age I’ve had a hip replacement and paired with the metal along my whole spine I’m quite the bionic woman!

One thing that I’ve learnt through having Marfan is that it’s the little things in life that matter. It’s a cliche but I remember looking in the mirror for the first time after my spinal surgery and seeing the difference in my body whilst happy tears streamed down my face. I remember the first time that I used my powerchair to go down to the local shop on my own as well, it was something I hadn’t done in years. It truly is the little things that matter the most.

You can find Shona here:

A huge thank you from Shona for sharing her story. It’s estimated that¬†1 in 5,000 people have Marfan Syndrome.¬†Knowledge is the key to raising awareness about rare diseases like Marfan. This month, I challenge you to tell at least 1 person about¬†the condition. One person at a time, we can raise awareness and stop suffering.¬†Marfan Trust carries out medical research to aid the diagnosis and treatment for those suffering with Marfan Syndrome.¬†Donate to Marfan Trust and help them continue saving lives.

Until next week.

Lily x

We Need To Talk About…MCAS and POTS // Guest Profile

Happy New Year, folks! A new year and new opportunities. For many, they include plans for self-improvement in the first few weeks and months of the year. But when you have a disability, every day has to be used as an¬†opportunity.¬†There is a¬†significant amount of work you have to put into maintaining a disability every single day. But try to think of it like a job; You would expect payment for any and all work you put into that, so why should this be any different? Self-care is hard-earned payment to your body and mind. Find a payment that works for you (mine is books &¬†fancy¬†tea) and don’t forget to cash that cheque often!

I’ll leave you with that for today and hand over to Kari –¬†A wonderful lady who brings us our first guest post of 2017. Enjoy!

Q. Can you tell me a little about yourself? Do you work, if so what do you do? 

I am a PhD student studying literature. I hope one day to be a lecturer at a university. I love reading and learning and being in libraries and sharing ideas. 

Q. Can you tell me about your condition(s) and how they affect you?

I have a couple of conditions. The first is called Mast Cell Activation Syndrome (MCAS). The mast cells are part of the immune system.¬†In a person with MCAS, mast cells are overactive and get triggered by all sorts of things that shouldn’t really trigger them. MCAS leads to a huge range of symptoms,¬†from merely uncomfortable to really debilitating. At its most dangerous, an MCAS reaction can¬†lead to fatal anaphylactic shock. The most common triggers for MCAS patients are foods, extreme temperatures and airborne chemicals.

I also have Postural Tachycardia Syndrome (POTS). In all people, when we stand up our blood is pulled downwards to our legs and feet by gravity. In¬†a healthy person, the blood vessels will constrict to push the blood back up to the heart and the brain. In someone with POTS their blood vessels don’t do that, which means their blood doesn’t get back to the heart and the brain properly. As you can imagine, this isn’t really ideal! Sometimes your¬†heart will start racing away to try to keep the blood pumping. Then because your heart is working so hard, it is really exhausting for your body and you feel tired most of the time!¬†Other times the blood pressure might just drop and then you faint.¬†

Q. Have you ever had an interaction with a stranger prompted by your disability?

I once had a bad interaction with a disability support officer who tried to tell me that having a ‘study buddy’ to accompany me to the library would help me overcome my symptoms. It felt very patronising, as a doctoral researcher of nearly 30 years old, to be told that when I’m having debilitating symptoms all I need is a ‘study buddy’ to chivvy me along.

Q. What is your typical day like? Do you commute, if so what is this experience like for you?

I used to commute every day twice a day at rush hour to get to my job in central London. In the end, I had to quit my job because commuting was so awfully damaging for me. Having to stand still on the packed trains would make my POTS symptoms terrible and I fainted quite a few times. 

And for an MCAS sufferer, public transport is also a huge problem because people wear so much perfume and cologne! Fragrances are a huge trigger for my mast cells (they are for most MCAS patients) and so most days I was having reactions that would involve my throat closing up, nausea and diarrhoea. It was really awful. 

I still commute these days but not every day, and I try to do it outside rush hour so I can get a seat.

Q. What is something that would surprise others to understand about your condition(s)? 

My MCAS makes me allergic to the cold and to exercise! If I am out in cold weather for more than just a few minutes my skin on my whole body will get covered in hives and be really itchy and really painful! 

It is quite common for people with MCAS to have bad reactions to exercise. Some people might find it great to have a legitimate excuse not to exercise, but I really hate it! Before I started getting ill, I used to love going running or to spin classes! 

Q. What glimpse of wisdom can you share with our readers? 

Because MCAS is not very well known among the medical community, it took me almost a decade to get diagnosed. Doctors were baffled by my symptoms and I was often told that I was making them up or that they were just down to stress. Now that I am diagnosed and treated, things are so much better. I have learned to manage my symptoms and still find ways to achieve goals that are important to me.

So the lesson I’ve learned is that there is always a way to overcome an obstacle. Yes, there might have to be changes. Yes, you might have to redefine who you think you are and redesign what you thought your life would look like. But you are more resilient than you think you are.¬†

An insightful step¬†into the shoes¬†of a¬†person with hidden disabilities! Thanks to the wonderful TFL Blue badge, London is set to become the ‘most inclusive¬†city in the world’. Changes like these impact the¬†lives of people like Kari and so many more. What a great time¬†to be a Londonder!

Tune in next week for another post ūüôā

Lily x

We Need To Talk About…Ulcerative Colitis || Guest Profile

This week we are hearing from Katie; a high-flying city worker who is working hard to strike a balance between her health and work-life.

Q. How old are you? 

I’m 30. I work in the City and work are quite accommodating in that I can work from home one or two days a week.¬†

Q. Can you tell me about your disability? 

I have asthma and ulcerative colitis and my colo-rectal consultant is also investigating me for rheumatoid arthritis. 

Q. What is your typical journey like (prior to the badge)?¬†What happens if you don’t get a seat? How does this impact your day?

Prior to the badge I found my commute very stressful – it was hard to stand to up for long and I have bowel cramps a lot. Asthma, especially in the winter, makes me breathless and wheezy. I ache all over. I arrived at work fatigued and dripping in sweat and in pain. This happens if I don’t get a seat.

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?

No visual cues at all. 

Q. How do you feel about the badge trial? 

The badge trial has been amazing for me!¬†About¬†75% of the time I have been offered a seat without asking. I feel confident to ask politely if I need to and somebody will move. People do stare a bit, but I’ve also had cheerful comments when people offer me a seat like “I’ve not seen one of those badges before” and then I can explain that it’s a trial.¬†

“I’ve heard the trial has been very successful and the plan is to roll it out in the New Year.”

It’s fantastic news! TFL needs to raise more awareness – visible posters at all stations and announcements.¬†

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

I feel quite positive living in London – I have found people in general to be quite helpful when they see the badge. The stairs up and down at stations can be hard work though and I miss having a car.

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

I think people might be surprised that I have a disability Рas it is invisible. I am able to work full time (working from home helps a lot). They also might be surprised at how fatigued I am almost all of the time. 

Another person with an invisible disability who is seeing marked results from the wonderful blue badge! Thanks for taking the time to read. Next week I will be discussing how to navigate the Christmas party season when you have a chronic illness.

And if you missed last weeks post, you can have a read here:  Should I have to defend my disability?

Until next week!

Lily x

It might sound over the top, but it really has changed my life || Guest Profile

Firstly, I wanted to apologise for my radio silence for the last couple of weeks! The nature of Ehlers-Danlos Syndrome is that it is a variable condition and these past weeks have been quite difficult ones for me. My hips have been particularly bad, which makes getting around almost impossible, which makes me feel pretty rubbish. I’ve been muddling through, but even getting time and energy to get a blog out was all a bit much. Onwards and upwards we go!

I’m back in the land of the moving and this week we are hearing from another person involved in the blue badge trial who also has EDS.

Q. How old are you?

I’m in my twenties – Put it this way I still get ID’d every time I buy alcohol.

Q. Can you tell me about your disability?

I have a condition called Ehlers-Danlos syndrome Type III, also known as Hypermobility Type. EDS is a congenital collagen disorder. Collagen is pretty much in every part of the body, so EDS affects everything. For me, it means chronic pain, particularly in certain areas like my jaw and my left shoulder. I get tired very quickly and take a long time to recuperate.

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

It depends whether it’s peak or off peak. Off peak was usually fine, I get on quite far out of the city centre, so there are usually plenty of seats, and the same is true off peak going home. Travelling during peak time is another matter‚Ķ I find it incredibly stressful, worrying before I even leave the house whether I’ll be able to get a seat.

Before the badge, I‚Äôd usually manage to get onto the tube but getting a seat was not usually an option. I didn’t feel confident asking for a seat, and part of the problem was even getting to the seating area – people are packed in like sardines, so it’s hard to move once you’re on. If I have to stand for more than about ten minutes, I can’t feel my feet any more due to circulation. This is not only painful, but also means that balancing becomes more difficult – not ideal on moving transport! My other problem is being able to hold on to something. I’m quite short, so have to stretch to reach the overhead bars, which means hyperextending (moving my joints out of their normal range) which is painful.

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

It would mean that that day would become a ‚Äúbad day‚ÄĚ; I’d be in too much pain to concentrate properly and would usually have to come home early. I’m a student, so I’m lucky to have that flexibility, but it’s still not ideal.

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?

Usually no, I sometimes wear ‚Äėtubegrip‚Äô ‚Äď a type of bandage – on my knee, but otherwise I look like a healthy twenty-something.

Q. How do you feel about the badge trial?

I think it was such a great idea. It’s given me the confidence to ask for a seat when I need one. There’s definitely room for improvement – I’m hoping for a more ergonomic and eye catching badge when it’s rolled out, but overall I think it’s been a massive success! It might sound a bit over the top, but it really has changed my life. I now feel confident when I have to travel at peak times, which I’d usually avoid like the plague if I could help it.

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

I’ve only ever really lived in cities, but I think the frequency and quality of London services sets it apart. There’s still more that could be done – I find stairs really difficult, and so many places don’t have step-free access yet, for example.

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

It’s made me a lot more efficient! I know that might sound counter-intuitive, but when I know I have specific tasks to get done, I plan them so I get them done in plenty of time. I always allow a buffer before deadlines, just in case, but generally now manage to arrange my tasks in a way that works for me. It makes me procrastinate much more efficiently too. So, when you’re preparing a meal, say a tomato sauce, you’d chop up all the vegetables and then get cooking, chopping up more as you’d need them along the way. This is something I find really difficult to do all in one go. So when I’m working from home, I’ll have breaks from my work where I’ll chop up an onion or peel a carrot. This also means that when I come to cook, I can just dump everything in the pan, as it’s all prepared. I get a break from my work, and rather than just watching Netflix or scrolling through Twitter, I try to get something useful done when I have the energy.

I hope you enjoyed hearing from a fellow ‚Äėzebra‚Äô this week. There are a lot of things I can relate to, including the renewed confidence I now have thanks to the ‚ÄėPlease offer me a seat‚Äô blue badge! It has been life-changing for me and I really hope TFL release it officially soon.

Right, I’ll be back next week (promise) with another blog.

Lily x

P.S. If you or someone you know is suffering from a hidden disability, I would love to speak to you! Please get in touch via the contact form.