We need to be more aware of invisible illnesses.
Thousands of people have conditions that you can’t see but they still have a huge impact on their day to day lives.
You Don’t Look Sick is a series talking about those conditions and what it’s like living with one.
Almara Abgarian, 29, from London, has gastroparesis -a long-term condition where the stomach can’t empty itself in the normal way.
Because food passes through the stomach more slowly, it causes bloating, stomach pain and vomiting.
Almara is often sick throughout the day and people don’t always understand that it is because of a long-term condition.
She tells Metro.co.uk: ‘In the past, some managers have raised an eyebrow when I explain I’ve been sick – because they think it’s because I’ve been out drinking. ‘I’m always terrified someone will come knocking on the disabled toilets telling me to get out. I only use it at work if I know I’m going to vomit, as I like the privacy and don’t feel like I have to rush out.’ Explaining the condition is also hard as most people have never heard of gastroparesis. ‘Generally, people are mostly just curious about my condition because very few have heard of it,’ Almara adds.
‘I don’t always like telling them the ins and outs though – mainly because there’s a look of pity from some, which I don’t want or need.’ She was diagnosed last year after years of dealing with symptoms with no explanation. ‘I had been suffering with stomach issues and regurgitating most (if not all) of my meals for almost two years, as well as feeling nauseous on a daily basis,’ she says. ‘Eventually, the doctor scheduled an endoscopy – which is a fairly simple, albeit complicated procedure where a camera is passed through my throat down to my stomach – and which indicated that I have a slow gastric emptying system. ‘It was stressful, because I wasn’t given much information afterwards beyond a quick chat with the nurse to discuss my results.
‘To confirm the diagnosis I was sent off to have a nuclear medicine test a few weeks later. You have to eat a pretty gross porridge that contains very small amounts of radioactive material, and undergo a series of scans every 10 minutes, then 15 minutes, then every half hour etc.
‘I was also unlucky in that the person who did my nuclear medicine test left the hospital shortly after and no one delivered the promised call to explain my results. ‘I called the hospital around 40 times over two weeks trying to get through but with no luck. Eventually I was so angry and upset – all I wanted was to know what was wrong with me – that I went into the hospital and demanded that someone call me back that same day.’ Finally receiving a diagnosis was upsetting for Almara but she says it was also a relief to know that there was something. ‘It’s hard to describe,’ she says. ‘In one way, it was nice to finally have an answer to what was wrong with me, but gastroparesis is a very rare, chronic condition that is incredibly difficult to treat. ‘Part of me was also angry that it had taken the doctors so long to diagnose it; they had fobbed me off with pills over and over, which never worked, and only took me seriously when I sat in the clinic and cried because I wasn’t able to keep anything down and was living with debilitating nausea.’ Gatroparesis is a rare condition and there is little research into why it happens or how to treat it, which Almara feels led to a delay in diagnosis as many of the doctors she saw did not pick up on her symptoms.
It’s also led to a delay in getting treatment because there are so few specialists available. She says: ‘Doctors aren’t sure why gastroparesis occurs and there are only two specialists in London who deal with the condition. I’m currently on a waiting list and have no idea when I’ll receive a call.’ She has found some ways to help with her symptoms (Picture: Almara Abgarian) Almara has been able to learn more about it and how to manage it but it still can have a huge impact on her life. ‘Imagine your stomach as a water glass. After a normal meal, most people’s stomachs will empty the contents into their intestines (and eventually, poo it out) after a few hours.
‘During my first endoscopy, doctors found that despite not eating or drinking anything for over 12 hours, I still had one litre of liquid in my stomach. ‘Just imagine if I had eaten – my ‘glass’ doesn’t empty but overflows, which leaves me bloated and in pain if I ‘over-eat’ (and by that I mean a normal amount of food, not cramming down a buffet),’ she says. People with gastroparesis are told to eat smaller portions and to eat around six times a day. This gives the stomach more time to empty.
Almara says: ‘I know how to manage my condition somewhat now, but some days you just don’t want to manage it – you just want to have a nice three-course meal with mates or eat some festival food without having to worry about what will happen.
‘It can be quite upsetting, as some days I walk through the supermarket and think “OK, so what food will make it less likely that I’ll throw up?”. ‘I also come from a family of chefs (having been one myself) and have lots of ‘foodie’ friends. ‘Going for big brunches or dinners is part of our social routine, but it also means spending a fair bit of money on a fancy meal with the likelihood that I will – you guessed it – be sick afterwards. ‘On a bad day, I’ll spend an entire day throwing up. It’s because I’m hungry so I’ll eat to satiate my appetite, but because there is no space left in my stomach, I’ll get sick. ‘I’ll either regurgitate small amounts in my mouth (which is oh-so-fun to swallow back down when I’m not somewhere where I can spit it out) or be properly bent over my toilet vomiting all of it up.’
She adds that there are times where she doesn’t notice it but the long-term effects mean that she needs to take medication. She says: ‘On a good day, when I eat foods that are easy on my stomach and stick to smaller portions over a longer period – people with gastroparesis are recommended to eat six times per day – I might not even notice my gastroparesis much.
‘The condition is known for coming and going in waves; meaning you could have weeks, months or years where it’s fairly stable – or the complete opposite. ‘However, as a result of the constant vomiting, I’ve also developed Grade A Esophagitis (irritation/inflammation to my throat) and have to take pills every day to reduce the level of acid in my stomach. ‘Unfortunately, this doesn’t always help – some mornings I’ll throw up a mixture of stomach acid and water before I’ve even ingested anything.
It’s sexy, I know.’ She’s had to make some lifestyle changes to deal with the condition but says that she has learnt to accept it. ‘I’m a fairly positive person and I’ve decided that this is just something that has happened to me – I can’t control it, so I just do my best to live with it. ‘Although, I’ve found that staying away from certain products like dairy, fried foods and vegetables or fruits with ‘skin’ makes things a little easier.
Going to the gym and generally trying to stay healthy also helps – but more from a mindset point of view than anything else. ‘I also don’t drink very often anymore as alcohol irritates my stomach and my hangovers have become much more intense because I already feel nauseous to begin with.’
With a lack of awareness around gastroparesis and other invisible illnesses, Almara wants to see people discuss them but in an understanding and respectful way. She says: ‘My condition doesn’t define me – I’ve just been dealt a bad hand, but I don’t want pity.
Just be kind and understanding and please don’t ask lots of questions unless I bring it up myself. ‘As an example, my best friend knows me so well that she notices me subtly swallowing down food that comes back up – but she doesn’t make a big deal out of it. Sometimes she’ll even joke it off, which helps.
‘As a final note, there should be more training for managers in workplaces, especially with freelancers. ‘Thankfully, my own bosses are very kind and don’t bat an eyelid when I tell them I need a day off for doctor’s appointments or would like to pop outside for some air because I feel nauseous – but I know a lot of people who aren’t as lucky.’