Welcome to You Don’t Look Sick, our weekly series about what it’s like to live with an invisible illness or hidden disability.
Charlotte Twinley, 21, from Arundel, West Sussex, has hypermobile Ehlers Danlos syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
HEDS is an inherited connective tissue disorder that is caused by defects in a protein called collagen. The condition can affect different parts of the body and for Charlotte, it causes problems with her joints as they often partially dislocate and with her digestive system.
She has an ileostomy bag fitted in June last year to bypass the parts of her digestive system that are the worst affected. This means that waste is collected in a bag attached to her stomach.
POTS causes an abnormal increase in heart rate after standing or sitting up, which can lead to dizziness and fainting.
Charlotte was diagnosed with both conditions at the age of 15, after she started to notice joint pain, followed by severe stomach pain a few months later.
A keen hockey player, Charlotte woke up one morning unable to move her legs but after tests and scans, doctors couldn’t find a cause. She was given crutches and gradually started to walk again.
A few months later, she woke up with stabbing pain in her stomach but again doctors couldn’t find the answer and she says one told her she had to ‘get over it and put up with it.’
Eventually, she was referred by her GP to consultant gastroenterologist at her local hospital who noticed that she had hypermobility as her joints are more flexible. He had recently attended a medical conference that discussed the relationship between hypermobility and digestive issues.
Charlotte was sent to another specialist in London who diagnosed her with EDS. Because of the collagen defects, Charlotte’s digestive system works much more slowly than a normal system.
She explains: ‘Because I’m hypermobile, all the connective tissue in my body can stretch too much and as connective tissue is around the whole body, this can affect everything from my joints to my digestive system.
‘Over the years, my colon and rectum became weaker due to lack of muscular support and stretchier, meaning that it was more difficult for them to move waste through my body and I started to get several different prolapses, making the problem even worse.’
Charlotte was given medication and laxatives and advised to try different diets to try to help her digestive system work more efficiently.
Beyond the physical problems her condition caused, it also had a huge impact on her mental health.
She explains: ‘It didn’t really hit me until a couple of years after being diagnosed that I would have to live with this for the rest of my life, as there is no cure for EDS.
‘I remember that it was very overwhelming and I was constantly going up to London to see various consultants and physiotherapists.
‘I was also incredibly embarrassed to tell people about how this was affecting me, as it’s essentially all about how I was constipated!
‘So, I never said much – all my friends knew is that I had stomach pains that affected how I ate and that my joints would get hurt easily during sport as I would often come to school wearing various bandages after playing hockey/netball/athletics (some of which I had to give up, a very hard thing for me to do).
‘This made life, along with my GCSEs, very difficult for me, affecting my mental health.’
She struggled with depression and started to self-harm as she struggled with the idea of being different from her friends.
The issues with her health also led to her struggling with how she felt about her body and she suffered from body dysmorphia, constantly putting herself down.
She started to restrict her diet even more and she developed anorexia. When she entered sixth form, she was drastically underweight and seriously ill.
Over five months, with the help of her parents, she worked with a therapist to help her gain weight. She went back to school just before her AS Level exams and went on to finish her final year before heading to university.
Wanting to take part in everything and have a normal Freshers week, Charlotte went out as much as she could but her health soon caught up with her.
Her digestive problems got much worse and soon she was only able to eat liquid food. She tried taking more laxatives and slowly introducing solid food again, which worked for a short time until one day in June 2017, she was unable to eat at all.
For just over a year, she lived on nutritional supplement drinks, as it was the only thing her digestive system could process without causing extreme pain.
Eventually, after five months of this, she went to see a colorectal surgeon and after reading stories of other people with EDS, she asked if she could have an operation to create the stoma (opening in her stomach) where an ileostomy bag could be fitted, which would mean the most problematic areas – the colon and rectum – would be bypassed.
She says: ‘This option was the only one that gave me hope as my quality of life was awful; I was on a liquid diet, took loads of laxatives and became incontinent because of them.
‘In the mornings, I would become incontinent and had to spend half of the day in the bathroom but, if I didn’t take all of this, I would never go to the toilet and I would be in extreme pain.
‘I could only leave the house in the afternoons, making my social life very difficult to keep up with and any jobs/education hard to commit to.’
The surgeon said no because her case was so complicated but Charlotte went to another doctor for a second opinion, who agreed to the operation.
In June 2018, after a year of living on nutritional supplement drinks, Charlotte had the operation, and it completely transformed her life.
She says: ‘ I slowly began to eat solid food after having to wean myself onto them like a baby – my stomach was not used to solid food after a whole year of a liquid diet.
‘Now, just over one year later, I am able to eat almost anything I want, as long as I chew thoroughly. I change my stoma bag every 3-4 days, which doesn’t take me too long – 10 minutes at the very most.
‘I can now leave the house in the mornings, without being glued to the bathroom.’
Now, Charlotte feels much more comfortable with her body, has a new boyfriend and is taking part in modelling campaigns around body image.
She says: ‘I look in the mirror and I don’t cry anymore. It’s ironic how a bag of poo attached to my stomach could change my whole perspective on how I feel about myself.’
Although the ileostomy has improved her digestive issues, EDS still has a big impact on her life.
She explains: ‘I still get a lot of joint problems with hEDS, as the joints aren’t as stable due to them being hypermobile.
‘This especially affects my ankles, knees and hips and is worse when I go upstairs.
‘I’m currently looking at getting a walking stick/support of some sort to help with this.
‘Sometimes, when the fatigue kicks in, I do have to have some ‘time out’ to recover as, with EDS, you do have to pace yourself otherwise you make yourself ill – I’ve had to learn that the hard way!
‘My skin is more delicate and so healing can take a long time; I’m still healing from my ileostomy operation as the skin around my stoma is still quite sore.
‘With this, I just have to be patient, as there’s usually not a lot I can do to help speed the process up.’
Throughout everything, one of the things Charlotte has struggled with is how people perceive her as despite the pain she is in, she looks well on the outside.
She has used disabled toilets for example, following her ileostomy operation, but one incident shortly after the surgery has made her reluctant unless it is an emergency.
She explains: ‘A week after my operation, while I was in a supermarket with my mum, I urgently needed to use a disabled toilet to empty my bag and all the other ‘normal’ toilets were occupied so I used my Radar Key to open the disabled toilet.
‘While I was in there, someone tried to get in and then there was a knock on the door. I was just about done at this point so I wasn’t in there for more than one minute after I heard the knocking.
‘When I came out, there was a man and his wife (who was in a wheelchair) glaring at me.
‘Despite the sign on the door saying ‘Not all disabilities are visible’, the man started yelling at me saying that I ‘had no right to use these toilets’ as they’re just for people in wheelchairs.
‘Bearing in mind I had just had surgery, I hadn’t even thought of what to say in this situation so I just stammered a little before walking away, hearing them ‘tut’ to each other behind my back.
‘It took me ages until I had the confidence to use a disabled toilet again – even now, I still struggle and still feel very self-conscious when I use one (particularly when there’s a very long queue for the ladies, and I feel all eyes on me as I slip into the disabled toilet).
‘Despite some of these ‘Not all disabilities are visible’ signs that are appearing on disabled toilet doors, I do feel as if people take no notice of them.’
Charlotte is now much more open about her conditions and has modelled with her ileostomy bag on show.
She writes a blog and posts on Instagram, promoting body positivity and talking about mental health, as she
wants to help others struggling to come to terms with their own physical and mental health issues to understand that it’s ok to be different.
She says: ‘In general, more awareness needs to be demonstrated – not necessarily to understand each and every invisible illness as there are just too many of them.
‘But more awareness of the need to be considerate and not to judge others when they use a Priority Seat on public transport when they’re not on crutches, when someone not in a wheelchair uses a disabled toilet or when someone needs to have a sick day when they seemed ‘fine’ yesterday.
‘The more people speak about this, the more we will all be heard.’
‘It’s impossible for anyone to actually understand what it feels like to have a chronic illness, but empathy would be nice and you can’t expect adults to be empathetic if they don’t learn about it when they’re young.
‘What’s more worrying is that lack of understanding often results in a lot of insensitive unsolicited advice. It’s the one thing that still bothers me and I like to think I have a pretty thick skin.
‘It’s amazing how many people have quite strong opinions on what could ‘cure’ me. I know it comes from a good place, but no, yoga, turmeric or CBD oil are not going to magically cure my chronic illness. Believe me, I’ve had a few decades to try everything.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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