'I'm a blind woman - this is how I'm preparing for IVF'
Making the decision to become a parent is a winding, complicated journey for most people. But for presenter, author and activist Lucy Edwards and her husband, Ollie, it was an obvious next step.
'We got together when he was 16 and I was 17 - we were childhood sweethearts,' says Edwards. 'I'm now 28, we got married a year ago and I've always wanted to be a mother.'
Unfortunately, the process to parenthood for Edwards and her partner will be slightly more complex. Just months after meeting her now-husband, Edwards began losing her eyesight due to Incontinentia Pigmenti, a rare genetic disorder.
'My eyesight condition is really, really rare and can cause complications in pregnancy and for the life if the child,' she says. 'If I was to conceive a boy with IP, his chances of survival would be really, really low: my late grandma had five miscarriages, and they were all boys. Thankfully, I don't have to put my body through that in this day and age,' she says.
Instead, Edwards will be having IVF so her eggs can be tested for the IP gene before creating an embryo.
'If I was told I was going to have a baby exactly like me, who would be blind but able to thrive and have an amazing life as a disabled person, I would conceive without any worry. But if a boy did survive with IP, they would be severely brain damaged. With that risk to life, I think the best decision is to remove the gene. But it's very multifaceted — I would hate to come across as not disability confident, because that's not what this is about.'
Prepping for IVF
Gene testing isn't the only extra step Edwards must face in her egg retrieval journey. To qualify for IVF on the NHS, you must have a BMI of less than 30, meaning Edwards now faces a weight loss journey.
For someone who has been through a battle to feel good about their body, it was a tricky conversation to be part of. 'When I first lost my eyesight, my body positivity was through the floor because I valued looking in the mirror over everything else. I had to battle with that for years,' she says.
'Now, I could fall into quite a toxic relationship to the idea that I need to lose weight. But I am seeing it as a medical step, rather than a personal one. I don't really think BMI as a metric is great - there are so many athletes who would be classes as overweight by that scale yet they're in healthy and fit bodies, and same with non-athletes - but I'm doing it because it's the NHS guidelines.'
That sensible attitude means Edwards is going about the weight loss journey slowly. 'I'm being measured about how many times I weigh myself, for example. My geneticist has already told me that I can do this on my own terms and she's been so supportive about the process. It's been good to not have her focus on aesthetics but on getting it right in terms of the medical process,' she says.
Lucy Edwards' IVF exercise and nutrition routine
The biggest change Edwards has made has been to her exercise routine. 'I've really struggled with acceptance in the gym before. I've had many personal trainers who I'm sure are great but I've not gelled with.
'They're often not trained to work with disabled bodies and I can often sense fear in them - I can tell they often worry about me stepping on a treadmill which then translates to how I feel about myself on it,' she says.
'I recently moved close to my mum and sister and we signed up to the gym together. We go at least twice a week and we're just silly - we dance on the treadmill when we get to one minute left of our run. Having a supportive family around me rather than a prescribed routine has helped me fall in love with exercise.'
As well as running, Edwards and her sister swim together. 'We just have a massive natter while we're doing the lengths,' she says. But the most transformative step has been lifting weights. 'Building muscle has been a massive part of my new routine over the past three to six months. I was so scared to lift weights but I've felt so much stronger and better in my body since doing it. Sometimes feeling those muscles work is like a massage for my whole body. I absolutely love it,' says Edwards.
Lifting weights has also helped her understand the role of nutrition. 'I really need to make sure that, despite the end goal being weight loss, I'm still keeping my calories up and nourishing my body. I'm trying to get stronger and also I work so hard on my business and my brand and I don't want to feel like I have no energy or headspace to do those things,' she says.
Avoiding crash diets or excessive food changes has also been important given her historic tricky relationship with eating. 'When I lost my eyesight, I started to see food as a way to control my body. It was like, if my eyesight gave up on me I had to make sure no other part of my body changed either. I'm very conscious that I've had a lot of work to do with myself to get to this really positive point,' she says.
As someone who enjoys eating big, comforting meals, Edwards is focusing most on her snacking routine. 'I love making myself a massive salad topped with loads of cheese and houmous and packed with things that really nourish me. But then I'm having fewer fizzy drinks, for example. I love Diet Coke but I know that it makes me hungrier because of the sweetener, so that's not serving me right now. I'm also making easy swaps, like crisps to Pop Chips, because I still want to enjoy things but be slightly more conscious,' she says.
Navigating online life
Despite initially struggling with her body image when she went blind, her blindness is actually the thing she credits with helping her be her most confident self. 'I think it's really helpful that I can't see other people's bodies on Instagram and compare myself. Now, I see my body as a wonderful thing that keeps me alive,' she says.
It's why she chooses to turn up online in such a positive way, amassing a huge and supportive online audience (she has 1.8 million followers on TikTok and over 200,000 on Instagram) for her funny, vulnerable and relatable posts. Her IVF journey will be no different.
'So many people are going through IVF or having to lose weight for medical treatments on the NHS. It's just refreshing, isn't it? I'm just a normal person who loves food but is having to lose weight and is trying to be conscious but positive at the same time,' she says.
But as we all know, those who trailblaze online can also face the darker side of the internet. 'I'm already getting comments about why I will make an unfit mother, but they all go to my spam folder. Unfortunately, I already know that after this journey, when I announce my pregnancy, people will be very horrible as well,' she exhales.
'You can probably hear I'm very apprehensive about that time. But it doesn't mean I don't want to do it. It gives me the fire in my bed educate more people, but it is painful. I want my child to know that I am an independent woman, and I'm there for them, and I already know that's going to be undermined by so many adults in this world.'
Luckily, Edwards says, 12 years of blindness has given her a resilience even she didn't know she could build. 'I'm doing it for haters. I'm sharing my story for people who are also going through the same thing as me, and to have the representation I never saw,' she says. And, of course, she's doing this to be the mother she always wanted to be.
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