Simone Gomez has cholangiocarcinoma – a serious heart condition that she was born with, but didn’t realise she had until she fell seriously ill in her 20s.
Now she’s on the road to recovery, but she has had to reevaluate her relationship with fitness because she can get out of breath just from walking.
‘I was born with a congenital heart defect,’ says Simone. ‘When I was at university, I kept falling asleep in lectures. I didn’t realise at the time, but I was having heart failure.
‘At age 27 I started feeling very unwell so went to hospital, initially nothing was detected so I was sent home but my mum took me to the specialist heart hospital and after tests I was diagnosed with heart failure.
‘The doctors said I was dying and needed to be admitted to hospital that night.’
Simone was terrified when doctors told her she would need an emergency heart transplant. The weeks of waiting to find a donor were almost unbearable.
‘I remember really well the morning I got a call from the hospital three months later, I was really scared but then they told me they’d found a donor heart.
‘Unfortunately I had a cold and it was decided I wasn’t well enough for the transplant – it was so disappointing, I dropped to the floor crying.
‘The next week though I got another call from the hospital to say they had found another heart and this time I was well enough for the operation which was fantastic.’
Staying fit is crucial for Simone, but it is also difficult. Her condition also led to her having a stroke, which means simple movements can be challenging.
‘It is so important to me as I know I need to keep my heart strong,’ she says. ‘The stroke impacted my mobility, so I need to keep active to help this.
‘Personally I felt the gym put too much pressure on my new heart.
‘I didn’t feel my PT was giving me the type of help or advice I needed. I wanted to get some stamina and energy back, but the gym wasn’t the right way for me.
‘Also I suffer from anxiety so didn’t help having other gym goers looking at me which made me feel uncomfortable. So I found other physical activities I enjoy more, like walking with my partner and family and dancing.’
Simone has had to come to terms with her physical limitations and learn how to be kind to her body during her recovery. She has to know when to ease off and to find the benefits in the low intensity activities that she can do.
‘I remember being on the high dependency ward in Lewisham hospital,’ says Simone. ‘My mother was getting me ready to have a bath so she sat me up.
‘As she sat me up she had turned round for a split second. I fell back onto the bed – which made me laugh – but at that point I realised I had no balance. I also had no mobility on my right side.
‘I couldn’t walk properly, I couldn’t move my right arm or hands and I lost my speech.
‘Sometimes I wake up tired, walking can exhaust me but I do what I can,’ she adds. ‘I also play Let’s Dance with my partner, even doing housework or going to Sainsbury’s can be a workout for me, it all counts.
‘Staying active helps to strengthen my heart and for me to get to know and understand my new heart. Its also helps me emotionally. It makes me feel good after knowing that I’ve done something positive that will benefit my health.’
For Simone, the hardest thing about her illness has been the emotional and mental side of recovery. Coming to terms with what had happened to her and contemplating her future was incredibly painful at times.
‘The hardest thing has been the emotional and mental side of the recovery,’ she tells us. ‘Dealing with all this in my twenties was so hard, I couldn’t understand why this was happening to me. It was hard to accept being so young and going through this.’
Simone says she has even struggled with friendships as in the past she has had difficulty being open about her condition – even with the people who are close to her.
‘I found it hard to open up to friends, so they couldn’t really understand what I was going through, so some friendships drifted apart,’ says Simone.
‘My family and my partner see it all and it’s with them that I can share the ups and downs, they have seen me break down at my lowest points. I call my parents my comfort blanket, they have supported me so much.’
Simone’s family are a huge motivation for her, but alongside their support she also needs to do things for herself. Feeling like she still has purpose and direction is a huge driving force for her.
‘I love having a project that excites me,’ says Simone. ‘I did a media make up course at London College of Beauty Therapy which was amazing. I would love to be a freelance make-up artist in the future.’
Simone thinks it’s really important for people to become more aware of invisible illnesses: ‘Because I’m young and don’t look ill, people don’t think there’s anything wrong with me,’ Simone explains. ‘But I have good and bad days.’
‘If you know someone with a long-term heath condition maybe take time out to ask how they’re doing. And do some research to see how you can help support them.’
Simone is sharing her story as part of a new national campaign ‘We Are Undefeatable’. The campaign, backed by a collaboration of 15 leading health and social care charities, aims to challenge common misconceptions that people with long-term health conditions can’t be active.
Strong Women is a weekly series that champions diversity in the world of sport and fitness.
A Sport England study found that 40% of women were avoiding physical activity due to a fear of judgement.
But, contrary to the limited images we so often see, women of any age, size, race or ability can be active and enjoy sport and fitness.
We hope that by normalising diverse depictions of women who are fit, strong and love their bodies, we will empower all women to shed their self-consciousness when it comes to getting active.
Each week we talk to women who are redefining what it means to be strong and achieving incredible things.
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