‘The black hole was there and I was right in the middle of it’
Julia tells us how she found her inner peace after the diagnosis.
Everything began when Julia hit puberty. Since then, she has literally been able to watch her legs grow larger and more misshapen. As she was bullied a lot back then, she started her ‘biggest hobby’ – losing weight – and developed an eating pattern which she retrospectively describes as destructive. On one hand, this manifested in passionate counting of calories, self-punishment and self-hatred but on the other, she also resorted to binge-eating when she was unhappy and feeling particularly low. At the same time, she withdrew more and more.
When looking for a change in 2017, she came across a job vacancy: a health care supply shop was looking for a new employee. Back then, Julia would’ve never guessed that the change of jobs would bring about the decisive turning point in her life. Even during her job interview, her boss-to-be recommended she have herself checked out by a specialist. That was what got the ball rolling.
‘Finally, someone recognised that there was a problem.'
As an employee in a health care supply shop, she was able to anticipate what was coming her way, but at the same time, she was terrified of it. She will always remember the day she took her first compression tights home: ‘After having finally managed to put on the tights after many breaks and much swearing, I simply sat there and cried. Suddenly, I had to face what I hated so much about myself and what I had always tried to hide.’
In the beginning, she felt constrained by the compression and trapped in her own body. Running and walking up stairs was very difficult – everything was sliding down, cut into her skin or made weird sounds. Everything was just awful for her.
‘The black hole was there and I was right in the middle of it.’
Thanks to the people around her, she slowly managed to free herself from this hole. ‘Everyone’s reaction was incredibly understanding – without being prompted, people would put out stools for me rather than me having to squeeze into tight garden chairs. Her friends also help her wherever they can: they take her shopping, give her compliments and take one piece of clothing after another to her changing cabin. Eventually, something happened which made her the person she is today: ‘All these negative thoughts and experiences turned into something positive. Gradually, I was able to recognise their benefits and started liking myself.’
Today, she is proud of having removed one of a line of obstacles. Shopping is no longer torturous – instead, she loves buying new dresses: ‘Since the diagnosis, about 80% of my wardrobe are dresses. I now have a proud collection of 59 dresses, and I love every single one of them. All of my dresses remind me of experiences; sad and happy moments that helped me learn to love myself.’ Her compression garments have become part of her everyday life. She wears them consistently, ‘apart from days when I simply want to feel the sun on my legs’. Still, Julia feels restricted by the illness and fights to stay in control of it day after day. To make sure she doesn’t fall back into a dark hole, she’s also been getting therapeutic treatment. During her therapy, she processes her past, which also allowed her to get a grip on her eating disorder.
How she benefits from her illness in her job
It’s her work at the health care supply shop which gives her courage and strength – here, she comes into contact with other lipedema patients on a daily basis. Through her own story, she can easily empathise with her customers and provide insightful assistance. She knows exactly how lipedema patients feel and what it means to wear compression tights – it’s not something they wear because they like the colour but because they have to wear them. She also knows that they’ve suffered a hard battle until they received their diagnosis. Many have had countless doctor’s appointments, were bullied for years, were their own worst enemy and had lost their self-esteem. Julia often hears ‘Thank goodness!’ when the door opens and the customers see her. ‘Every time I see a new customer with tears in her eyes, I know that I have to lift someone out of the same black hole that I once fell into.’ As soon as the customers find out that Julia is a lipedema patient herself, the tension eases and the customers place their trust in her.
This is Julia’s message to the lipedema community:
‘Consciously confront whatever you hate the most about yourself. You don’t have to become besties with your legs, but learn to accept their presence. That’s the only way to not let the illness control your life.
Get informed about the symptoms and the cause of the disease. You can get a lot of answers to your questions in health care supply shops, physiotherapy practices and from various different doctors. There are support groups that meet up regularly. You can benefit from each other’s experiences and have a laugh together.
After the first 14 days, you get used to your new garments and you’ll also notice their benefits. Use that energy, let it into your life and enjoy the compliments. And trust me, these compliments will begin once that new skirt or dress is being flaunted.You’re so much more than you think you are! You don’t just consist of misshapen legs or arms – you have countless features that are incredibly beautiful.’
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