Welcome to You Don’t Look Sick – our weekly series about living with an invisible illness or hidden condition.
Michael Anthony, 20, from Scotland, has biliary atresia – a type of liver failure.
The condition occurs in babies where the bile ducts on the outside and inside of the liver don’t work properly, eventually causing a complete blockage of bile from the liver, leading to scarring on the organ.
He was diagnosed at eight weeks old, and had surgery called a kasai procedure to allow the body to bypass the blocked ducts and drain into the gut.
The surgery left him with a scar across his abdomen and as he got older, he became very self conscious of his condition.
He explains: ‘I have a huge scar that stretches across my abdomen and had a huge bloated stomach, which made me stand out even when I wore a shirt.
‘I could never hide it or get rid of it so I never liked or felt comfortable with my body. I felt drastically different to others.
‘It started to make me feel isolated and resentful as no one else seemed to have the problems I did.
‘It knocked my confidence, especially at school and there were loads of things that meant I was treated differently to protect me.’
What is biliary atresia?
- Biliary atresia means the destruction or absence of all or a portion of the bile duct that lies outside the liver.
- This is a tube that allows bile to flow from the liver into the gall bladder and, eventually, the small intestine.
- This bile carries waste products from the liver and helps with the absorption of fats and vitamins by the intestines.
- In biliary atresia, absence or destruction of the bile ducts results in the abnormal accumulation of bile in the liver.
- Babies with biliary atresia develop yellowing of the skin and whites of the eyes (jaundice) and scarring of the liver (fibrosis).
- The exact cause of biliary atresia is unknown.
He has started to learn to accept his condition through working with the Children’s Liver Disease Foundation and meeting others also living with liver diseases.
At 16, his parents took him to the Closer to the Edge programme, run by the charity, where he got to meet others also living with liver failure.
Michael explains: ‘I got to meet a group of people who all had a form of liver disease, some even having the same condition as me.
‘Simply knowing I’m not alone helped me greatly. I’ve grown to love my disease, making it my own and I make sure I use every opportunity to give back so other kids get the amazing support that I had.’
There are still many things that still make him feel different to other people – but he is now much more confident.
Currently, Michael manages his condition with medication but knows that some day, a liver transplant will be needed.
He says: ‘Life gets a bit more complicated with things such as school or work and being on a strict amount of medication.
‘It can be difficult making sure you stay on top of it. I’ve been on medication for nearly my entire life but I still find it difficult to balance everything and can often forget
‘There’s a lot more than just the medical side with hospital appointments and medication routines.
‘It can also affect my ability to participate in things my peers take for granted. For example, going on holiday is harder as getting insurance is incredibly expensive.
‘It can often feel like a losing battle and it can feel like you’re restricting other people who want to go away somewhere.’
The condition means that Michael can’t drink alcohol, which also sets him apart from other people his age, but he still makes sure he has a good time.
He says: ‘At parties or at clubs people will remark how they find it amazing that I can still have fun and dance like an idiot without having any alcohol.’
Beyond these things, one of the most difficult things for Michael is not knowing what will happen with his condition.
He says: ‘That is the most troubling thing about the disease. I have a lot of knowledge about my condition now but there is still a degree of uncertainty as eventually a transplant will be needed.
‘With that comes a number of questions like how much time do I have left before a transplant? Will I be able to get a transplant? Will the transplant come with rejection and will I be able to handle the upkeep?’
He tried not to dwell on what he can’t do, instead focusing on hobbies like swimming and studying for his qualification in measurement and control engineering.
He says: ‘I push the boundaries of what it is I’m able to do. I’ve taken part in swimming since I was young, as it was one of the only sports I could do.
‘I loved it so much I carried it further into lifeguarding and teaching. It’s also helped me to strengthen my body.
‘I’ve also been a mechanic from a young age often helping my car enthusiastic dad in our home garage restoring classic cars. It is something that my dad has taught me to love as much as he does.
‘Being a sickly kid it felt impossible for me to do these things but as my confidence has grown, I have pushed myself to become better and I can enjoy these passions. Now I feel like my condition isn’t holding me back.’
Living with the condition throughout his entire life, Michael says it has also given him opportunities to do things he would never have expected.
He says: ‘There are negatives that come with the disease but there are a number of positives that come with it too.
‘One of the biggest is the opportunities and support. Through the Children’s Liver Disease Foundation, I’ve met young people who share my difficulties and experiences so I’ve become part of a community.
‘I’ve found both common ground and a place where I don’t have to explain what I have and where I don’t need to feel different. I have a big family where I feel welcomed.’
Michael now likes to give back and help others with the condition come to terms with life with liver failure and wants to raise more awareness
He says: ‘For people to understand invisible illness better it’s important to know that it’s ok to ask about it.
‘Of course people think that it’s a sensitive issue – it can be but it’s important to never be afraid to ask.
‘I often encourage people to ask me questions if they don’t understand as that’s the best way to learn about it.
‘It’s a two-way street and if you have an illness never be afraid to tell people about it. While most may not want to draw attention to it, people are more accepting than you may think.’
‘Helping them to understand your illness leads to them being more accepting.
‘The most important thing to note is that whatever the illness, it is not something that you can control or blame yourself for having.’
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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