‘Could you possibly have lipedema?’
Lisa* was asked this by someone in her circles of acquaintances. When an employee at a health care supply shop brought it up, too, Lisa decided to go see a phlebologist.The sobering diagnosis: stage 2 lipedema. Here’s what has changed since.
‘Could you possibly have lipedema?’, my friend asked me one evening after our handball training session. My first reaction was ‘What on earth?’ – until more and more people from my circle of acquaintances brought it up: my physiotherapist, friends and even an employee at a health care supply shop who was only supposed to sell me a knee support. And that’s where the journey began.
I didn’t really inform myself properly before going to see a phlebologist. He did a general check-up and sent me on my way with the information that I suffer from stage 2 lipedema. My boyfriend and I drove home and I was initially just glad knowing that the appointment resulted in something. It was only little by little that I realised the repercussions. I was immediately prescribed lymph drainage (my GP did the same later on) as well as compression tights.
The diagnosis isn’t exactly a nice thing, of course. On one hand, knowing that it might continue to get worse is an incredibly exhausting feeling – even though I wear the compression tights regularly (i. e. daily). And on the other hand, it’s also very difficult to not know when the next lipedema burst might come around, not knowing at what point you won’t fit into your tights anymore – and it’s not exactly like that’s just down to the chocolate, that tasty burger or those soft drinks.
That still doesn’t mean that I’ll crawl back into the hole that I hid in when the illness erupted (probably around the age of 15). Back then, I lost a lot of my confidence but was always able to build it back up again in the following years through success in my sport, youth work and thanks to my friends. I only have one option: acceptance. And so I’ll continue wearing my tights which squeeze my legs into a much prettier shape. I will go have the lymph drainage done to lose some water. I will live with it and, despite everything, I will never lose the self-confidence that has taken me a long time to build up.
I, too, have sometimes found myself sitting on the sofa covered in sweat because I simply could not get into my compression tights. That really gets you down at first, of course. Still, I told myself: keep trying and don’t give up.
‘I feel more feminine’
I’m actually doing pretty well with the daily wearing and washing of my compression tights. They hardly bother me. I wear them regularly and can put them on within a minute. To do this, I need a plan, strength and quite a bit of willpower. The choice of dress is an easy one, too – winter in particular is not a problem at all. Dark tights, a skirt on top and combine this with a fluffy, warm jumper, a scarf and some boots (only medium-high ones because of my calves, of course) – done. And yes, I did first have to get used to wearing skirts and dresses. But you can get used to pretty much anything – and now I even feel a little more feminine.
In summer, it can get warm, though – really warm. But even that is manageable if you’ve got a small spray bottle full of water on you. Every time it gets too warm, I spray some water onto my tights and suddenly I’m feeling cooler than my friend with the short dress. This summer, I ordered skin-coloured compression tights for the first time. Now, I can wear flip flops again and don’t have to constantly rely on closed shoes anymore.
Nevertheless, I still struggle with getting dressed sometimes. If it’s the height of summer and you already get out of bed sweating or you have a shower right after a workout, you can’t always ‘just pop on the compression tights’. I, too, have sometimes found myself sitting on the sofa covered in sweat because I simply could not get into my compression tights. That really gets you down at first, of course. Still, I told myself: keep trying and don’t give up. That’s not my style and surely not the style of a single lady who has lipedema – they’ve surely had to deal with a lot more strenuous tasks in their lives.
If I can raise awareness amongst a few people that way and if they’re being polite and friendly to me, I’ll gladly endure the awkward looks.
‘Are you wearing a diving suit?’
In my everyday life, I actually manage my diagnosis pretty well. However, I do still get days when those looks by strangers make me uneasy. The popular advice of simply ignoring these people doesn’t always work for me. The skin-coloured compression stockings in particular can cause some confused and pitying looks. I’ve hardly got any negative comments so far, though – apart from the question of whether I was wearing a diving suit, and I actually found this funny rather than mean.
So far, there’s been quite a few times when people addressed my tights. One lady even asked whether I have lipedema. The reactions were, generally speaking, very positive. They simply wanted to ask out of interest and would often say goodbye with a slightly pitying, but friendly look. If I can raise awareness amongst a few people that way and if they’re being polite and friendly to me, I’ll gladly endure the awkward looks.
Being honest, however, I do still have the fear that my body will develop more fat. By doing sports, generally moving a lot and maintaining a balanced diet, I try to keep the ‘normal’ fat (‘wobbly fat’) at a minimum at least. So I can only hope that it won’t get worse. There’s certainly nothing wrong with using compression tights and getting lymph drainage done.
*Due to her employment situation, Lisa does not want to share any personal data. This is also the reason why we are not publishing any photos in which she can be clearly identified.
This could also be of interest:
This is Jana: ‘I felt detached from my own body’
Jana is an open and amiable person – her charming smile gives the 27-year-old a carefree and candid appearance. But Jana’s life is anything but carefree: Although she went through a marathon of surgeries, her lipedema came back. Now, her arms are affected, too. In this interview, the student tells us how she has been since this setback.
This is Yvonne: ‘Running is like meditation to me’
Yvonne is 41 years old. She received her lipedema diagnosis in November 2017. Despite this, she motivates herself to exercise every single day in order to run her next marathon – because it’s her sport and the daily victory over the illness that give her a sense of freedom.