You Don’t Look Sick is our weekly series about invisible illnesses, showing what it’s like to live with a condition that most people can’t see.
Paul Stephens, 18, from Surrey, was diagnosed with haemophilia A when he was born. It is a rare genetic bleeding disorder, which means he lacks the factors responsible for blood clotting.
It means that he bruises easily and can bleed excessively if his skin is cut. He can also bleed from joints and muscles because of a contact injury and this can cause pain and swelling.
But Paul has never let his condition hold him back.
He tells Metro.co.uk: ‘Haemophilia doesn’t define me as a person. I’ll always define myself and who I am.’
Paul’s older brother also has the condition so when he was born, doctors tested for it straight away.
He says: ‘I’ve never known any different. It’s always been a part of my life. I feel like I was just a normal kid and I just always wanted to be active. I never really thought about it.
‘I knew I couldn’t do contact sports like rugby but it never really interested me anyway.’
Now Paul is used to dealing with the condition and knows how to manage it so he can still enjoy playing sport.
He says: ‘I know how to live with it. I’ve got used to doing injections and it’s just become part of my life. It’s just normal for me now.’
Paul has injections every other day to help the levels of factor VIII in his blood. Without the injections, the level in Paul’s blood is under 1%, while in someone without haemophilia, it is at least 50%.
The injections help to raise the level of factor VIII and helps his blood clot properly.
If he has an internal bleed because of an injury, he needs to take an extra dose of his medication.
The bleeds cause him a lot of pain and sometimes it has been so severe, he has gone to hospital thinking that he has broken a bone.
He explains: ‘It can be confusing and sometimes I need to go to hospital just to check it out and figure out whether I’ve broken it or it’s just another bleed.’
Growing up with the condition, Paul has had a lot of support from his family and they have always encouraged him.
‘I’ve had lots of people helping me,’ he says. ‘When I was younger, I had a great haemophilia centre and that is part of the reason why I am quite independent.
‘My family have been great. My mum is very knowledgeable because of my brother having the condition too. We both know what our bodies are like.
‘Having a brother with the condition created a sort of rivalry – if he was doing his own injections, I wanted to do mine, for example.
‘I saw him play cricket too and knew that the condition wouldn’t stop me doing things like that either.’
Paul has always been heavily involved in cricket and although his condition means he does need to be careful to avoid injury, he has moved through the ranks and is now a player for his county.
He says: ‘I was always playing when I was young with my brother. My brother played and my dad played so I just grew up with it. I played my first game when I was seven.
‘I’ve had loads of people worrying about me and saying, “Surely you shouldn’t play.” It’s good to know they worry about me but I know myself and my body. And I know my limits.
‘It’s always in the back of my mind to be careful and if the ball hits me, I just deal with it. It has been part of my life for so long, it doesn’t cause too much damage to my muscles.’
Paul went to a cricket college for two years and hopes to continue playing at a high level now he has finished.
Throughout his cricket career, he says he’s only told people that he feels need to know about the condition because he doesn’t want them to treat him any differently.
He says that when he does tell people, they often say ‘You don’t look sick’ because he is young, fit and looks healthy.
He says: ‘I know most people would have no idea unless they have seen me have a bleed or something. The condition is invisible to most people.
‘I remember when I was at primary school, we were talking about medical conditions in a lesson and when I talked about mine, not many people would believe it.
‘It can be really difficult to get people to understand .’
Paul is part of the Why Sit It Out campaign by global biotherapeutics leader CSL Behring, to raise awareness of the benefits of exercise for those living with haemophilia.
He feels it’s important to show that those with the condition can still take part in sports and stay active.
Paul explains: ‘I know other people with the condition who aren’t very active and they have a lot more problems with their joints.
‘I wanted to show that you can be active and that it can be a huge help for your body, and mentally too.
‘There are some things you can’t really play but there are loads you can.’
He also feels that the campaign is important to highlight invisible illnesses and to show that not every disability is visible.
He says: ‘We need more things on social media and the internet to educate people about invisible illnesses.
‘The more educated people are, the more they’ll understand that just because you can’t see a condition or disability, it doesn’t mean that person doesn’t need some help.’
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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