We met with Beth in January 2020 to introduce her to the LIPOELASTIC unique bespoke service as we previously discussed her struggle to find compression garments that fit her body shape. On this occasion, we met for a lovely dinner and talked about what it is like to live with Lipedema (in the UK known as LIPEDEMA). June is LIPEDEMA awareness month and we decided to share this interview with you.
What is it like living with LIPEDEMA?
It affects my life daily, as I am someone who has had it throughout their whole life. And it has been in various stages. I have been much bigger but also much smaller. I am a very classic Lipedema shape and it has always been difficult for me to find the clothes to fit the way I want them to without having them tailored. I am the shape that has small waist and rounded hips and thick thighs. But I am a very active person and trying to eat healthy so generally I do not have that much of pain.
When were you diagnosed?
I was diagnosed in October 2017 by Dr Emily Iker In Santa Monica. She is a lymphedema specialist.
How does the diagnosis affect your life? Was it a dealbreaker of knowing that you have LIPEDEMA?
The diagnosis changed my life, as I have never heard of this disease before July of that same year. And I had my whole life struggled with weight loss and weight gain and a lots of dieting and exercise but never was able to change my shape, whereas other people who diet and exercise can affect the way their body looks. I was never able to do that. So when I received my diagnosis it became clear why so many things in my life were the way they were. And for pretty much the entirety of the first year, I was experiencing the aha moment every day. I thought, OMG that is why this happens this way, or why that feels that way.
Did you feel relieved when you were diagnosed?
Yes, I think that now it makes me feel like, there is a reason why I have always been the way I have been. And some people would say diet and exercise do not affect lipedema I don’t subscribe to that theory, because I have been much bigger, and I also have been smaller. So, although I have always maintained the same exact shape, it would be always proportionally bigger or smaller. But I do think that there is some impact, that diet and exercise can help. It is just never going to allow you to get rid of it, but it will affect you in advancing the stages.
What is your advice for daily life with lipedema?
I think that movement is key. Walking and weightlifting helps a lot. Mobility becomes an issue, so whatever strength you can get and maintain. Any exercise in water is phenomenal, because it acts like a lymphatic massage. So that really helps to keep the lymph system as healthy as it can be and it also helps to reduce the fibrosis. And then I think that whatever way of eating works for your body, so I think you have to implement this at least 80% of your time.
Can you describe fibrosis?
Yes. Regular fat feels like butter, it is very soft and its malleable, but lipedema fat feels like pearls, grains of sand or rice. And it becomes as the stages advance more fibrotic and more intertangled and firmer. So, what you are always trying to do is to get your tissue as soft as possible through whatever method you use. I use a vibration plate. It is a machine where you stand it vibrates with you. In addition to that water exercise is the best thing for me to get my tissue loose.
Some people do not advise to use a whirlpool, as the warm water may cause swelling on the body, but I personally don’t have an issue with that.
What role do compression garments play in your everyday life?
I try to wear compression garments as often as possible and especially for me, sitting is the worst. I can walk and stand for long periods of time as that does not cause swelling the same way sitting does. So, I am trying to make sure that whenever I know I will be sitting for a longer period, I wear my compression garment. I think that compression helps ward off inflammation.
How do you manage your condition?
I use various of methods to manage my condition. I follow eating guidelines; I move my body regularly. I have used congestive therapy, I often exercise in the pool, which stimulates manual lymphatic drainage, and I also had some MLD. I use a vibration plate on a regular basis and recently I started to practice dry brushing. I discovered these remedies through the Fat disorder research society, the Lipedema community and through my physician.