My horrifying experience with Crohn’s disease proves it isn’t just a ‘toilet disease’

From what I can remember it all started in October 2013.

At the end of September I had started to feel slightly unwell – but I didn’t think anything of it as I’d been to Cannock Chase and completed the Go Ape treetop challenge.

Fast forward a month and I could hardly walk around due to pains in my abdomen. I was tired and my appetite had started to decrease.

I can’t remember a lot between then and when I was first admitted to hospital other than lots of doctors trips where I was told the pains were all in my head, that I wasn’t eating because I didn’t want to and that I wasn’t ill, I just ‘had anorexia’.

All I wanted was for someone to listen. Why were the people that are supposed to help you the most, the ones that were failing me?

My admission was great timing, it was my 18th birthday. I was told I had appendicitis and was given IV antibiotics.

A week went by and I can’t say I felt any different but I was discharged nonetheless.

The next month was full of more doctors visits which led to my second hospital admission. My heart rate and inflammation levels were through the roof.

In the few months that had passed I had developed a lump. It was only pea sized at first but now it had grown and you could see it physically sticking out of my abdomen. It was painful to touch.

I had an ultrasound as they were worried it was my ovaries but all was clear. I then had an MRI scan that confirmed I had a mass growing in my bowel area but they couldn’t say what it was.

‘It’s not Crohn’s’ the Gastro team told me. Apparently it couldn’t be because I wasn’t running the toilet all the time and didn’t have the ‘typical’ signs.

I was left overnight and when I woke the next morning I was screaming in pain. I was injected with morphine and a surgeon came to see me and said I’d be having emergency surgery that afternoon.

Surgery? I was 18, I had never been ill in my life and now I was lying in a hospital bed preparing myself to be cut open.

Most of the next 2 weeks was a blur. I was so high on drugs I didn’t even know what had happened or if the surgery has been a success.

I later found out my bowel had burst, hence the pain I was in that morning.

I’d been cut straight down my stomach, had part of my bowel removed, my appendix taken out and a stoma formed.

A biopsy was taken and it was then confirmed  that I had in fact been suffering with Crohn’s Disease.

I couldn’t take it in. Just 6 months ago I was, what I thought, a healthy, confident teenage girl. Now I was 4 stone 13lbs and I’d got this bag attached to me.

I cried for days. Why me? That’s all I ever thought.

I had a central line in my neck to feed me as I continued to lose weight. When they took it out I had what can only be described as a panic attack times by 100.

I couldn’t breathe, I was terrified. I remember holding my dad’s hand and begging him not to leave me. He thought I was going to die.

I was given oxygen overnight and from then on I suddenly started to feel better. After what seemed like months, I was discharged and I honestly felt the best I had in a long time.

I was eating everything and anything and soon enough I became comfortable with my bag.

Despite accepting my bag and being grateful for it saving my life, I decided to have the reversal 8-9 months later after I had another scan that confirmed my Crohn’s was no longer active. I was so excited.

But little did I know what was yet to come.

My reversal went really well and I was discharged within 4 days. I thought that was the end of it and that I could now get on with my life.

A few days later I was in the worst pain I’d ever felt in my life. Actually scrap that, that kind of pain comes later on but at the time it was pretty bad.

I couldn’t walk and my wounds had started to leak. After ringing 111 and not having much luck we went straight to A&E.

To this day, I still dread to think what would have happened if I hadn’t.

I was in A&E for about 8 hours, my gown was soaked through from my wounds and my veins had all collapsed.

I was put onto a ward and a man came over to pull out some of the staples in my stomach and it was like the flood gates had opened. My wounds just poured out.

I shouted out in pain.

He proceeded to scrape out my open wounds to get all the infected pus out. I screamed and cried for him to stop. He didn’t say a word, I thought I was going to pass out.

THIS was the worst pain I’d ever felt.

My wounds had to be packed. Something that carried on for months afterwards until they healed.

I remember seeing my stomach for the first time. These gaping holes where neat little scars had once been. Holes that, despite me thinking were the end of the world, I never imagined would heal so quickly.

The body really is an amazing thing.

I found out that due to the infection in my wounds I had also contracted sepsis, a life-threatening condition. I couldn’t believe it.

I’d already been handed one disease and now I’d had to battle something else on top. Thankfully after a lot of antibiotics I was home a week later, just in time for Christmas.

The next few months were good. I still felt like I was in remission but I started to develop a lot of mouth ulcers. These got worse and I started to feel unwell again.

By September 2015 I was put on steroids.

I was left to deteriorate again for months. This time my symptoms were more stereotypical which meant I couldn’t leave the house.

I had more tests which confirmed I had bile salt malabsorption and also oral Crohn’s.

I also had to endure a colonoscopy which has left me traumatised.

I had three members of staff around me, one putting a tube up my nose, one putting one down my throat and one trying to put a camera up my bum, which was very ulcerated.

After 5 minutes of kicking and screaming, the procedure was abandoned, but it did confirm my Crohn’s was flaring again.

I am now taking Humira injections to try and stabilise the inflammation in my bowel but I am also waiting to start treatment for my oral Crohn’s.

Inflammatory bowel disease isn’t what everyone deems it to be.

It’s enduring tests, surgery, medication, as well as going hand in hand with a lot of other conditions.

It’s not just about going to the toilet. It’s a hell of a lot more.

Words by Natalie Bamford

How a fitness craze turned my life around after Ulcerative colitis nearly destroyed it

I was diagnosed with Ulcerative colitis, a form of Inflammatory bowel disease at aged 17 – during my final year of A Levels.

Ulcerative colitis nearly cost me a chance to go to university. I was constantly missing school, suffering with lack of sleep and having constant flare ups (blood loss, weight loss, tonne of meds). I was trying to catch up on work but I was constantly rushing to the toilet.

I made it to university where I experienced another 3 years of flare ups. This was probably due to stress and not looking after myself – constant bad food, an increase of alcohol and just an overall bad lifestyle.

I was around 75kg and what I thought was the peak of physical fitness. I graduated with a 2:1 and took a short break to the USA to de-stress.

But the second I got back, I was straight back to having aggressive flare ups, being unable to work for months, trying new medication every couple of weeks to the point I was having constant hospital visits and stays.

In March 2014 I was admitted to hospital to have part of my inflamed bowel removed and to be fitted with an ileostomy bag.

But the doctors ended up deciding they wanted to try one more drug and avoided the surgery. It wasn’t great but it was the last medication I could try.

Towards the end of 2014 I started working at a sports university and I started to use their facilities to get fit. I had always been interested in going to the gym but never wanted to commit.

I was that ‘typical lad’  who worked on getting big arms and chest and buying standard supplements you see in supermarkets.

When I was surrounded by world class athletes I started to take a bigger interest in my health and fitness. I got to an average level of fitness, but I wanted more.

When I was working in the USA I remember seeing something that blew me away. Seeing men and women, almost superhuman, pushing their bodies and minds to braking point. What I saw was CrossFit.

CrossFit is a fitness regime which was developed by Greg Glassman over several decades. It is described as constant varied functional movements performed at high intensity.

The workouts are based on functional movements, and these movements reflect the best aspects of gymnastics, weightlifting, running, rowing and more. These movements relate to everyday fitness and movements.

It appealed to me with the success I had seen it have on people. I wanted to push myself as far as my body could go and then more!

I started attending the classes the CrossFit box (gym) put on several times a day. You turn up, go through some stretches, maybe some strength work and then get onto the work out of the day.

The whole process is done in an hour. I thought I was fit, but this wasn’t the case. I was feeling exhausted after each workout but feeling a sense of achievement.

I remember doing a workout called Cindy. It’s 20 minutes of as many rounds as possible of 5 pull ups, 10 press ups, 15 air squats. I got just over 6 rounds and was struggling to do the pull ups…. but now I am over 20 rounds.

I attended the classes for several months, learning the skills, building a good foundation of fitness. I then got a coach that gave me that extra push. I did a couple of competitions and kept training hard but there was always room for improvement.

I have never felt as fit as I currently do – but don’t get me wrong there is always room for improvement.

When looking back at old pictures of myself, I don’t recognise the person I used to be.

I have surrounded myself with a great set of friends and fellow athletes that I can learn from and work with to improve. I have made some changes to my lifestyle to improve my health. I have cut out alcohol all together, nearly 6 months without a drink, as my body does not react well to it.

My diet has become very paleo, which is a diet that is based on what early humans ate, so: meat, vegetables, nuts and seeds. I do enjoy the occasional pizza or burger but try to stay away from as many processed foods as possible.

Every night I stretch, mobilise, and practise my breathing techniques. These help me relax and de-stress – which is key to keeping my colitis at bay.  

I am at a good healthy weight but I am always researching and looking for things to improve my health.

I still suffer like everyone else with fatigue, increased toilet visits and lack of sleep but I aim to improve my way of life. 

I enjoy CrossFit so much and having seen the improvement in my life, so much so that I am going into the coaching side of it.

I have my Level One course in a few weeks and after that I will be able to take classes. I can’t wait to promote a healthy lifestyle.

As well as coaching I am undertaking my masters degree in sport and exercise. My research dissertation is based around how adaptive people train and compete in CrossFit.

They are not heroes, there are examples of these people out there proving people wrong in relation to their fitness. I want to improve people’s life. I would love to open an adaptive athletes CrossFit gym.

Hopefully, by improving my lifestyle and continuing in CrossFit I will see a reduction in hospital visits, less flare ups and just a general improvement in my condition that I’ve been suffering with for many years.

I would say to anyone suffering with a invisible illness, surround yourself with supportive people, make small changes to your lifestyle and if you can do some exercise, it could alter your life for the better.

Words By Matt James Deacon

13 things sufferers of Inflammatory bowel disease are tired of hearing 

Inflammatory bowel disease is a term mainly  used to describe the conditions of Crohn’s disease and ulcerative colitis.

Both diseases are long term chronic conditions which usually involve inflammation of the gut.

Because Inflammatory bowel disease is invisible, it can be incredibly hard to seek support and get the help and understanding that is very much needed.

Instead, many sufferers are faced with judgement and disbelief, simply because those who aren’t familiar with either condition refuse to believe that people could possibly be suffering if it isn’t immediately – physically – obvious.

Here are 13 things suffers of Inflammatory bowel disease are tired of hearing:

1. ‘I have IBS, that’s the same isn’t it?’

No, it’s no. IBS is Irritable bowel syndrome – a long term condition affecting your digestive system.

IBD is Inflammatory bowel disease – a term used to describe not only, but prominently, Crohn’s disease and Ulcerative colitis.

IBD is currently an incurable illness. IBS isn’t life threatening despite how unpleasant it is.

2. ‘Maybe if you ate better you would feel better’

Diet tends to have nothing to do with your IBD, you could eat all the fruit and vegetables in the world, you’d still have IBD. While it may work for some, it won’t always work for others – in fact, foods with more fibre tend to put many people into a flare.

3. ‘Try this product, it will cure you’

You’re on Facebook after a long night of no sleep and lots of toilet trips. You open Facebook and you’ve got an inbox from someone you have never met telling you they have the cure for your IBD.

No amount of juices, drinks or diets is going to change the fact you have IBD. While they may help with some symptoms, they are definitely not going to cure your disease.

4. ‘You’re so boring now you never do anything’

It’s not that we’re boring, we’re unwell. Our bodies are constantly fighting a daily battle just to muster up the energy to move from your bed.

We’d love to be able to live a ‘normal’ life, not worrying about where the nearest toilet is or if we’re going to have an accident.

5. ‘Stop being lazy’

I wish it was that simple, it’s not that we’re being lazy. We genuinely don’t have the energy some days to do anything.

When you have IBD, your body is in effect attacking itself and there’s nothing you can do.

6. ‘Why are you sleeping all the time?’

We all love sleep, don’t we?

Imagine waking up constantly tired every morning. No matter how much sleep you do get, you could still sleep for another 12 hours.

7. ‘Do you really need to use those disabled toilets?’

Well yes we do, it’s a difference between having an accident or getting to the toilet on time.

Some sufferers of IBD have had sugery and have ostomy bags, which need emptying and sometimes replacing. A small toilet cubicle doesn’t have the necessary space – or cleanliness – to do this.

8. ‘Exercise, it will make you feel better’

While all of us should be exercising and living a healthy life style. It won’t cure your IBD.

It may help with some of your symptoms but it’s definitely no cure.

And when someone’s literally just a couple of weeks out of life-saving surgery, going for a jog isn’t exactly easy.

9. ‘You’re ill again?’

It’s an incurable illness, it isn’t going away anytime soon.

We may be ‘ill again’ but there’s not much we can do about it. Sorry.

10. ‘It’s all in your head’

It’s most definitely not all in our heads.

There’s no way to sugarcoat this but we wouldn’t be spending so much time on the toilet or in pain, if we were making it up.

11. ‘You’ve lost/put on weight’

With IBD it happens both ways, your body isn’t retaining enough nutrients and vitamins.

This can cause weight loss, it can happen instantly.

On the flip side, some medications used to manage IBD can make you gain weight.

Unfortunately we don’t have much choice or control over our body and we can put on weight.

We don’t need these comments, they’re not helpful or necessary.

12. ‘You’re going to the toilet… again?!’

Yes… again.

Like your average normal person we need to go to the toilet, the difference with us is we need use the toilet more.

We usually can’t control when we need to go.

13. ‘It’s just an excuse, surely it’s not that bad’

It’s definitely not an excuse.

Life would be a lot easier if it was just an excuse. We wouldn’t be in constant pain visiting the toilet frequently.

Some days might not be as bad as others but we can’t predict how we’re going to feel.

Sufferers of IBD out there, we salute you, you fight every single day against something that has now become normality for you. If that doesn’t signify complete and utter strength I don’t know what does.

Words by James Conlon

An open letter to all airlines who serve passengers with invisible illnesses

I have an invisible illness. That means that I, along with thousands of others, suffer in silence most of the time.

It means that able-bodied privilege is not only all around me but that I’m hyper aware of it as most of the world assumes I am just like them. I’ve learned to live with my invisible illness and work with it but recently I had an experience that was a slap in the face to myself and anyone who constantly hears ‘But you don’t look sick!’

I am a 3-time cancer survivor facing heart failure and implanted with a Left-Ventricular-Assist-Device or LVAD to help circulate my blood. An artificial heart to put it in simple terms. And I’m relatively young at 35. Piercings, pink hair, pink cheeks, and a pretty smile so I don’t expect people to automatically know how ill I am.

I make efforts to not look like I’m dying whenever possible but sometimes I do need help. Recently I flew for the first time since getting my LVAD placed. I was nervous but prepared ahead of time. I had spoken to my doctors about it, I had a letter from them for TSA to make security easier, I spoke to the airline (Air Canada) ahead of time to make sure they were aware of my needs, and I requested wheelchair service so I didn’t have to overexert myself walking across all the terminals. I thought it would be fine. It was a nightmare.

On my first flight I pre-boarded so I could get help with my bag.

It’s heavy and contains my medical equipment and must be with me at all times but since I am still healing from my open heart surgery I cannot lift it up into the overhead bins. Pre-boarding is supposed to allow you extra time and help. When I pre-boarded boarded there were no flight attendants to be found. I pressed the call button but within seconds the plane was filled with regular passengers. I waited until the aisles were clear and called for help again but by the time a flight attendant came all the overhead bins were full. I started to really worry about my medical equipment and even more so when he started to insist that my bag MUST be checked.
I complained that I had pre-boarded for the extra help and never got it and he just walked away saying ‘write a letter’. It was only when I insisted that this LIFE SAVING medical equipment cannot be separated from me and started to pull out the letter from my doctors that he agreed to hold it up front for me.
I had told the agent when I checked in that I would need wheelchair service when I was to meet my connecting flight at Vancouver . I am familiar with Vancouver Airport and how large it is and I only had a short time between flights. This was compounded when my first flight arrived late. I disembarked and saw a man standing at the top of the ramp next to some wheelchairs. Already huffing and puffing just from dragging my bag up the ramp I saw him and smiled and exclaimed ‘Oh are you for me? I requested a wheelchair!’ He gave me a once over and saw a young healthy looking mobile woman and said ‘No, I have a cart.’ I looked confused so he said ‘A golf cart. Here take the elevator,’ and he pushed the button for me and walked away.

Up top I saw his cart and some seats and figured a cart was even better than a wheelchair so I waited for him or whomever was supposed to help me as I requested.

I watched all my fellow passengers leave. I watched the flight attendants leave. I watched the pilots leave. No sign of that guy again and by this time I was in a severe time crunch to get to my next flight.
So I start walking, getting more and more tired. At the end of a hallway I meet a young airport employee who was in a wheelchair himself. I explain my situation to him and he guides me to customs where he tells an agent there that I need a cart. She attempts to raise the man who was supposed to meet me on the radio 3 times but he does not answer. I start getting nervous about making my connection so she calls for another cart, puts me in the speed line for customs, and says the cart should meet me on the other side.
I go through with no issues but there is no cart on the other side. All the employees I ask about it have no idea where I’m supposed to go. I wander the terminal getting more and more panicked until I spot an Air Canada counter. I am panting and coughing by this point and I stumble over and say ‘Please can you help me?’ No one moves.
I explain that I had requested a wheelchair and none ever came for me. They still don’t move but one man sleepily asks if I still need one. I’m almost in tears at this point just out of sheer frustration. The woman who had helped me on the other side of customs walked by at that point, she had her purse and jacket and was clearly off work for the day.

She saw how upset I was and said she’d take me herself.

She grabbed a wheelchair and whisked me off as I thanked her profusely and tried to calm my racing heart down. She was an angel, she pushed me across the international and the domestic terminals all on her own and there is no way on earth I could have walked that far myself even if I had all the time in the world.
She got me as far as the security check point and then I was on my own again. Having already done this before my first flight I was all ready with my passport, boarding pass, and letter explaining my LVAD and how I cannot go through metal detectors and need a pat-down. My LVAD is internal but the controller and batteries to power it are external and connected by a cord that comes out of my abdomen and hang at my side in a bag.
I explained this to them and how I cannot remove this bag but they can inspect it. Still I was barked at and yelled at with demands to place my bag on the conveyor belt by at least 4 employees. I finally got fed up and was forced to lift up my shirt to show them where the bag came out of my body! Then and only then did they let me go through, and they still tried to force me through the metal detectors.
When I repeated that I need a pat-down I asked them to please hurry as my flight was leaving in 10 minutes. It is my opinion that this annoyed them. The man who seemed to be in charge started moving very, very slowly. The female agent did my pat down reasonably fast but he took my paperwork and walked away slow and took an unreasonably long time getting it back to me. At this point I lost it and actually started to cry and he just looked me in the eye and sauntered away slowly without breaking eye contact leaving me no doubt that he was punishing me for being emotional.
I finally got my paperwork back and thank the heavens there was a cart at the end of the security check, and even though he wasn’t there for me when he saw my boarding pass and how the plane was due to leave at that very moment he took me instead. He warned me that we might not make it and I started to panic, my heart started racing, and my chest started to hurt. We pulled up to the gate and the doors were closed. I started to cry and begged the agent there to let me on, it wasn’t my fault, I didn’t get the help I needed.

She took pity and let me on and helped me with my bag herself.

I boarded with the entire plane staring at my tear streaked face as I coughed and struggled to catch my breath and clutched my chest and I couldn’t help but feel like I was being terribly overly dramatic. But in hindsight all that running and fear and adrenaline might have hurt my heart and I was in very real physical distress. I sat down in my seat and promptly fell asleep before we even took off.
My return flight went fairly smooth except for one moment that put it all in perspective. This time I reminded everyone at every step of the way that I needed a wheelchair or cart at Vancouver and this time there was one there to meet me. Security was much kinder and a United Airlines agent wheeled me right up to the gate and parked me by the desk along with 2 other more elderly passengers in wheelchairs where I waited with my bags on my lap.
They announced the pre-boarding and United Airlines flight attendants came and took the two passengers in wheelchairs on either side of me so I waited for one to come help me as well. Then they announced regular boarding. I was honestly flabbergasted. I moved my bags off my lap and stood up from my wheelchair and everyone in line stared at me.
I went up to the agent at the counter and told him I needed to pre-board. He looked at me and sighed and said well they already announced it and I had missed it. I told him quite curtly that I know they announced it I was sitting right next to him in a wheelchair and watched as the other two passengers in wheelchairs got help so I had assumed I was going to be helped as well.

He sighed again and said something along the lines of ‘Fine, you can board now then if you want.’

He clearly seemed to think I was making it up and was just trying to cut the line. When I said I would be needing help with my bags he actually rolled his eyes! He grabbed my bag without saying another word and took off speed-walking down the ramp.
I trailed after him trying to explain that I have a weak heart and my LVAD and recent surgery and I actually was apologizing for needing him to lift the bag since he was so obviously annoyed. He put my bag up and walked away without another word and I sat down and felt like the biggest jerk in the world.
It didn’t even occur to me until almost an hour later that HE was the jerk, that I shouldn’t be made to feel bad for needing help, and that he had judged me with one glance to be a liar and a troublemaker since my illness is invisible. So did the man at the top of the ramp with my first Vancouver connection. He took one look at me and decided that I couldn’t possibly be sick. I was lying, I was lazy, I was out of shape and didn’t want to walk, or I just wanted attention. I sat there and all my shame and guilt turned into anger and righteousness.
I am a very independent woman and I already find it hard to ask for help. Then when I do I get judged and shamed and flat-out ignored! People of all ages can get sick. Wearing makeup to hide the bags under your eyes and clothing that covers your surgical scars does not mean you do not need help. Smiling and being polite does not mean you are not in pain.

My illness is invisible and during those flights I felt invisible as well.

Dismissed and ignored. It made me terrified to ever fly again and let me explain what a loss that is to me. When you live with heart failure you have to live as if each day might be your last because it very well might be. So that bucket list of things to do, places to see, people to visit one last time while I still can… most of that just became impossible for me if I’m afraid to fly.
My whole life I’ve refused to let my health dictate who I am and what I can and cannot do, but I believe that race across the airport could have killed me. And I cannot take that risk. I can’t risk being ignored again, I can’t risk being made to feel invisible as I pant and cough and beg for help.
So that is why I’m writing this and making it public. So that all airlines can take notice, not just Air Canada and United, and hopefully they’ll make some changes in the way they treat the disabled. Perhaps to spread awareness of people with invisible illness so that when a child is going through chemo but hasn’t lost his hair yet, or a young mother with fibromyalgia, or a teenager with chronic pain, or anyone else who doesn’t fit the stereotype of a ‘sick person’ asks for help they are met with courtesy and respect not judgment and rolled eyes.
I have been flying alone since I was 7 years old without a lick of fear and I hate that this experience has made me afraid. I hate that others ignorance is crippling me more than my own illness. So I’m speaking up and I hope others will as well and that together we can make the world a more caring and comfortable place for all those with disabilities, hidden or otherwise.
Words by Shanti Parmelee

How having a mental and a chronic illness has messed up my eating habits

I have had a problem with food for as long as I can remember.

It started when I was quite young, 6 or so I think. I was always a little bit chubby but as a little girl that wasn’t a concern of mine. I enjoyed my food, maybe if even a little too much.

But my dad had started taking me swimming in order for me to lose some weight, and there was this one time where we’d gone to the shops for a new swimming costume. I tried one on that I liked, but was told that I couldn’t wear it because I looked far too fat in it.

While this wasn’t what led to my eating disorder, which saw me hospitalised in 2011, it was definitely a stemming factor and likely one of the first factors to the following years that saw my self-esteem completely deteriorate.

But anyway, this isn’t just about my trouble with bulimia – you can read all about that here.

This is about how both bipolar disorder and my ostomy reversal – of which came as a result of a battle with Ulcerative colitis that saw me having an ileostomy bag for 10 months – alongside my past weight struggles have affected my eating habits and the way I view myself.

You see, since having my ostomy reversal, I end up using the bathroom at least eight times a day.

This can be incredibly disruptive to my daily routine and can mean I’m often unable to leave the house for longer than a few hours or even at all. Of course, there is medication to help slow my digestive system down – but I haven’t yet found one that hasn’t left me in horrendous amounts of pain a few hours after taking them.

To help myself, I have been advised to eat less fibre-filled foods, such as white bread, white potatoes and basically anything that you’d avoid when dieting.

Which would sound easy enough – if I wasn’t absolutely terrified of gaining weight, and if I wasn’t on medication that makes me gain it faster than normal.

And this is where the bipolar disorder comes in.

For my bipolar disorder, I take mood-stabilising medication and anti-psychotics. Unfortunately, most mental health medication comes with a weight gain side effect – and this can’t always be managed by good eating, as some medications actually change the way your body stores fat and makes you gain the weight quicker than usual.

But even so, to keep my weight steady, I need to eat healthily. But this, as you can tell, is a huge issue when I’ve been told to eat things to slow my digestive system.

So I feel as though I’m constantly stuck in limbo.

When I eat these carby foods, I feel bloated and horrible in myself. I feel unattractive and I hate looking in the mirror. I know some of this lack of self-esteem stems from the eating disorder habits I still harbour, but it has an incredibly negative effect on my mental health, and can often make my low periods feel even lower.

I often avoid going out or wearing certain things because I feel so uncomfortable in myself.

When I eat better, more fruit, vegetables and grains, I feel more confident. Happier in myself, non-bloated, but I end up limiting myself because I’m stuck in the bathroom more often and I end up with awful stomach pain.

It feels like a never-ending cycle that always has the same end-result of feeling crap.

I really, really, just wish there was a way that I could feel good in myself both physically and mentally without risking one bout of good-health for the other.

While suffering with both a mental and physical illness is hard enough, it’s even more difficult, when you’re constantly subsiding one or the other just to feel good about yourself.

It almost feels that to live a ‘normal’ life, I am either going to have to pick a team: my mental health or my physical.

But sadly, I know that even when picking a team – one is always going to be negatively affected.

Words by Hattie Gladwell

 

An honest letter to my chronic illness

Dear Ulcerative colitis,

When I first heard your name, I did not know what you were or how you would change my life. I had no idea of your magnitude. I thought you were something that would disappear with taking some pills. Little did I know, I was going to be stuck with you for the rest of my life.

What a crazy three years it has been since that day I first became aware of you. It hasn’t been the easiest or most glamorous of times. You have brought me so much pain, sickness, stress, anxiety and isolation from the world.

However, I do not blame you. I know that you appeared because I needed to learn how to take care of myself better. At the time, I was under so much emotional stress and I  didn’t take care of my body or mind. You came to me with a message:

You need to stop and slow down. You didn’t listen to the signals your body was sending you and so now I am here to push you into self-care and learning about your wounds.

I am grateful for this, because without you I wouldn’t have begun this journey of self-love and healing.

I have come to accept that you are part of me and you are a constant reminder to listen to my intuitions about my body. However, that does not mean that I do not fear you. I am always worried about pushing too far and upsetting you. Our relationship will never be one of love but it does hold qualities of gratitude and acceptance.

Finally, I would like to thank you for pushing me to explore who I really am and find my authentic truth. I don’t hate you, not really.

I hope that one day we can be good friends and I will fear you no longer.

Love,

Rebecca

11 things you’ll only know if you have both a mental and a chronic illness

In January 2015, I was diagnosed with ulcerative colitis – a form of Inflammatory bowel disease after having emergency surgery to remove the colon it had taken hold of. 

By the end of 2015, I was diagnosed with type 1 bipolar disorder – a mood disorder which, with type 1, means I have more periods of elation than I do depression.

Both, in their own way, are tough enough to deal with. But when dealing with them together, it’s a whole other story.

Here are 11 things you’ll only know if you have both a mental and a chronic illness.

1. It’s incredibly hard work

You often feel as though you’re going one step forward just to be pulled two steps back. This is because generally, as soon as you get one illness under control, the other pops up to say hello.

2. They can often counteract each other

If it’s not one or the other: it’s both. A flare up with my UC can influence a worsened mood and a symptoms from my bipolar disorder – such as constant nightmares and little sleep during a manic episode, can influence the way my UC acts.

3. You take a LOT of medication

While you take medication for your chronic illness, you also take it for your mental illness. And sometimes, each medication can create a worsening effect on the opposing illness. It’s not fun.

4. You can feel trapped

You sometimes feel as if you’re never going to win, as if you’re never going to get better. Your mental illness episodes are sprung upon you alongside the episodes that come from a chronic illness. You feel as though you can’t just do good for a couple of weeks without something going downhill.

5. You have extra awareness to raise

Both chronic illnesses and mental illnesses are invisible illnesses. And this sucks – especially when you’re fighting the corners of both.

6. You feel guilty a lot

If it’s not one thing, it’s the other. And you start to feel guilty as you realise you haven’t left the bathroom much, the bedroom much or even seen past your four walls in a long time.

7. You need a great set of friends who truly understand you

With my UC, I can end up stuck in the bathroom up to 10 times a day. It makes me feel rubbish and makes me question what the point is when I’m not seeing further than my bathroom walls at times.

When I am in a low episode with my bipolar disorder, I can struggle to leave my house let alone my bedroom, feeling unmotivated, uninspired and just generally crap. So you really need a good set of friends who understand this and don’t pressurise you into going out or make you feel guilty for not doing so either.

8. You’re on a first-name-basis with your GP

You’ve been to them for so many different things that you start to get to know them personally – where they studied, what their family’s like, what their favourite pizza topping is… you get me.

9. People find it hard to separate your illnesses

People, and even your doctors, forget that your chronic and mental illnesses are separate. So you often end up talking more about one than the other just so that things aren’t confused. Otherwise when you’re in a bad episode with your mental health, you’re faced with comments such as: ‘Maybe you’re just not very well in your chronic illness and you’re feeling bad about that’ – as if you can’t distinguish between the two yourself.

10. You deal with patronising comments more than you’ll ever know

Having both a mental and chronic illness inspires many patronising comments, such as: ‘It’s all in your head’, and ‘It’s your chronic illness that’s getting you down’. ‘You should get out more or go for a run’ is one of the best, though.

11. You’re an incredibly strong person

With every negative comes this one positive – you deserve an award for the crap you’re dealing with. Dealing with two invisible illnesses simultaneously makes you an incredibly strong person – one that can handle more than most.

And that’s something to be truly proud of.

Words by Hattie Gladwell