Sue

“Learn to LOVE your legs who carry a bigger burden than others”

When did you first suspect you had Lipoedema??

In 1981, when I was 18 years old, and a co-worker asked WHY I had a small waist but large hips & legs.  I didn’t find out why until 38 years later in 2019 when I was diagnosed.

What words of support or hope can you share with women living with Lipoedema??

After 45 years of questioning my body and experiencing excruciating pain in my legs, I was banging on Doctor’s desks demanding answers, as my body was getting worse. At my first diagnosis of Lipoedema, the nurse came close to me and whispered, “your body shape is not your fault”. Now, 2 years later my only wish was this disease was more known about 45 years ago.  The earlier Lipoedema is detected, measures can be made to help it from progressing out of control. My quality of life now, is only as good as it is, from listening to the medical team I have around me and supporting me.  Seek out your team and surround yourself with people who know how to live with and treat this disease.  There are now numerous support groups on social media, so link in and give it all you’ve got, the rewards for both physical & mental wellbeing are huge.

 What’s your best Lipoedema tip?  

Learn to LOVE your legs who carry a bigger burden than others. Talk to them and yourself like you would to your best friend.

What’s something that people often don’t know about Lipoedema??

Majority of people (including Doctors) don’t know Lipoedema even exists.  When I explain the diseased fat cannot be exercised or dieted away with calorie control, they are fascinated and shocked. I can see the change in peoples thinking and labelling of obesity, shifting to compassion and support from both men and women, including those I had only just met.  When I am vulnerable and discuss my diagnosis, I have had nothing but positivity and interest, with some people saying they have changed their attitude hearing about Lipoedema.