Katie Love - A Love Story
This is the story of Katie’s resilience, her ongoing battle with Ehlers-Danlos Syndrome, and how cycling is the bellow for her flame. Despite her fluctuating health and the risks, she uses her bike for physical and mental therapy.
Words by Dean Hersey
“Cycling is my life, my therapy and my light when darkness falls”
Katie Love is based in East Sussex, in close proximity to the coast with its towering white chalk cliffs. Her home is only a short drive from the South Downs National Park and the English mountain bike mecca of the Surrey Hills. Katie has always been the sporty type, and her introduction to the world of two wheels started with Motocross from a young age. Her Dad used to take her along to the races whilst he competed.
Combined with a ferocious appetite to compete, Katie has that ‘I’ll give that a go’ attitude. At a young age, she dabbled in everything. From being inspired by watching sports in the Olympic games, like the javelin, she would watch it and have to give it a go. Alongside playing football and hockey, there was always something special about the bicycle. She had always ridden bikes as far back as she could remember, but It was in 2016 that mountain biking really took hold. Originally her brother had started to race motocross, but the costs were not sustainable for her parents. As a kind of substitute, he started racing downhill, which isn't much cheaper, but Katie wanted to tag along with that. She was soon struck by everything and anything mountain biking, entering races and falling in love with the scene.
Mountain biking really got under her skin. She continued to race downhill for a few seasons but eventually succumbed to the pressure. She loathed the feeling of standing up at the start gate alone. It really got to her, and Katie’s results sheet usually featured three letters; D.N.F. She couldn't change the uncomfortable stress she felt, and the competition was fierce, with only the same couple of women turning up at the races each week. So rather than quitting altogether, Katie swapped that environment for riding trails for fun with her friends.
An undeniable, highly competitive streak fuelled her hunger to compete. She soon missed the competition and discovered running. There was instant gratification from finding that she was a natural runner. This led to her entering an Ultra Marathon, and low and behold, she won it, her first time out with minimal training. Before her ‘Ultra’ entry, the furthest she had ever run was 12 miles.
A natural progression from running led her to buy a road bike to have a crack at triathlons, and then in late 2017, Katie entered an Iron Man-distanced event. Katie was soon unexpectedly entranced by the road cycling spell. It wasn't long before she dropped the swimming and running aspects and began pouring every spare hour into her pedalling. What started as entering a few races soon escalated to completing a whole winter series. After six races, she got her CAT 2 license and received some support. Unfortunately, at this point, her symptoms began to take hold. The harder she worked, the worse she felt. As her health quickly spiralled, Katie never managed to race under the colours of the team she had joined.
Understandably Katie found this a difficult pill to swallow. Being sidelined with health problems whilst her teammates started to see some success as the season progressed was just another mental hurdle she needed to process, alongside trying to untie the tightening knots with her physical health. These were competitors and riders Katie thought that if she had the chance, she might have been able to have challenged during the races.
She graduated through the application process for the Paralympic Talent Development programme with British Cycling. But with the uncertainty of her health, she questioned if it was really for her when she won't know how she might feel from one day to the next. Katie doesn't feel that she is at a place where she can apply the level of pressure to perform that she feels it deserves, and anything less than her best wouldn't be doing her results any justice, so she reached the difficult decision to pull her place from the process.
Despite her endurance and cardiovascular engine, Katie has always felt like there is something not quite right with her health. Even going back to when she was a baby. It has taken the past 20 years to get a diagnosis. This amount of time sadly is quite common for sufferers to be identified as having Ehlers-Danlos. Not many people have heard of Ehlers-Danlos Syndromes. It is an umbrella term that covers a group of rare inherited conditions affecting the connective tissues in your body. These connective tissues support the skin, tendons, ligaments, bones, blood vessels, and vital organs. EDS affects different people in different ways. While some people’s symptoms might be subtle, others are disabling and painful. For years, her mother fought for a diagnosis, knowing that things didn't seem right with Katie. No test or blood sample will tell that you have EDS. Medical professionals must monitor your symptoms closely for long periods, sometimes years, to understand what is happening.
Katie suffered from joint pains and numerous dislocations. Participating in sports is a double-edged sword, helping to ease pains and build up a tolerance, keeping fit and strong both in the body and the mind. But the risk of long-lasting damage with the pain and continual dislocations sometimes outweighs these benefits. Katie is still learning how to manage her expectations, but she feels she understands the risks. She can no longer run pain-free, especially not the kind of distances she once had success with. She has since been forced to quit that too, but cycling offers less impact on her body, even ripping down a trail on her mountain bike.
Previously Katie has managed to battle on with her condition, still able to compete, thanks to her high pain threshold. In the last four years, the balance has tipped out of her favour, and EDS now affects her heart, lungs and bowels. It would be fair to say that it is causing issues and pain throughout her body. She has recently been told that she has Mobitz type 2 heart block, which could result in Katie needing a pacemaker to help with an irregular rhythm by emitting an electrical pulse to manage her heart.
On a bad spell, she simply struggles to complete normal daily tasks like walking up the stairs at home and even finding the energy to talk. From a highly active and dedicated weekly exercise routine, Katie is now reduced to just being able to manage one ride a week. She battles with feeling great one minute and comfortably being able to ride her bike for four hours but then being knocked out for a week. During her ride, she constantly challenges herself to determine whether she is fine and whether all this is just made up or if it has just all been a bad dream. Then just like that, it all comes flooding back, and she quickly finds herself overwhelmed with pain and frustration in equal measure.
Katie has finally found a medical professional specialising in EDS, so she is undergoing a barrage of tests. She is working hard to determine whether she is even safe to continue exercising at all. This is vitally important to Katie as it is only when she is out on her bike that she feels like everybody else. She is riding with people, and she looks like them. There are no apparent signs that she has all this going on in her life. She feels like she is normal. It offers her rest bite from the battles that she wages on a daily basis and allows her to forget for a few hours about the pain and all the tests. Riding a bicycle gives her a chance to be outside, breathe and be human. Importantly enjoying herself and living in the moment. Katie can get the opportunity to ask something of her body and make it suffer for a change, rather than her medical condition dictating to her how her day, week or month will play out.
“Riding any form of bike gives me the freedom to ride away from those worries and negative thoughts in my head. Instead, my thoughts are being fed through my eyes that see the beauty of life…
…Mountain biking is part of who I am. I have been riding mountain bikes for as long as I can remember. It gives me a feeling of strength and elation that is hard to match elsewhere…
…I’ve had a bit of time out and not riding as much, but the last year I have rekindled my love for it. My recent trip to Bike Park Wales warmed my heart and made me feel 'normal' with no problems.”
Katie finds that Ehlers-Danlos syndrome is a lonely and frustrating condition due to a wide range of symptoms, and the severity level for each individual differs. No one would honestly know what you are suffering from, which can change daily. This, in turn, can send close friends and family mixed messages and, as a result, finds you battling your mental health and trying to prove you are not making it up. She openly confesses that the last three years have been the toughest of her life. The continuing uphill battle with her health conditions has made things progressively more difficult. After losing her mother, who was close to and has been the biggest supporter in her fight, Katie faced an emotional and mental setback. Since struggling with her health, Katie has learnt to take every day as it comes, so there are no scribbles on her calendar with race dates for 2023. She has ambitions to race some enduro events but is currently not looking too far into the future and just riding for the fun and enjoyment when her condition and feelings allow.
Unfortunately for Katie, it doesn't end with EDS. After six clavicle fractures, four were on the left collarbone. Katie has had to have surgery and is left with a lifelong adaptation. Due to complications during the first operation, she was diagnosed with Thoracic Outlet Syndrome. Together with the added risk involved with cycling and mountain biking imparticular, her riding is hampered by pain and a changeable level of strength during her rides.
After her third surgery in an attempt to mend her collarbone, accompanied by her partner, they embarked on the Tom Pidcock Grand Fondo road ride in Yorkshire. Despite being in considerable pain and discomfort, she completed it and loved the experience. It is a memory of being on the bike that she draws on frequently. The feelings she had on the bike that day she locks onto. The sentiments and her spirit of that memory offer her both comfort and drive when facing repeated tough spells. Cherishing and holding onto the fondest memories of cycling gives Katie the desire to swing her leg over her bike again as soon as she feels well. Katie doesn't mind if that is a short road ride or squeezing some trail time into her day. Just being on her bicycle offers her some rest bite, an escape. Her love and enjoyment of riding a bike, combined with her resilience and positive ‘give it a go’ attitude, keep Katie on the right side of the line. When her physical conditions keep her confined to her bed, too tired to ride, it gives her strength and serves as a welcomed distraction.
“The best advice I can give those with conditions and an illness like myself is to ride for now and not get het-up on the future. I ended up getting poorly and frustrated rather than riding for now and in the present. It is less stressful, and you won't feel like you have disappointed yourself and others, and guess what? You will probably end up riding better and riding more. You will enjoy riding your bike for what it is, and for most of us, that is why we started in the first place. So stop, sit back and relax. This is your journey, so enjoy every minute. A story never starts at the end.” Katie Love.