Lucinda’s Story

Lipoedema has run in my family for generations, but has only relatively recently been diagnosed, in myself and my mother and my grandmother – all at once.

To start from the beginning, I was a very skinny child and never struggled with my weight. I do have an aunt without Lipoedema who is very slim, and it was generally assumed in the family that I was taking after her.

I remember one day that my grandmother commented I “was getting the Roberts bum after all” when I was 13 or 14. I asked my mother what that meant, who explained grandma was talking about this big bum which has been in the family from the Roberts’ side for generations, and our family has long called it the ‘Roberts’ bum for that reason.

So that’s when I first started to get insecure and pay attention to that region, which really had started to expand rapidly. Within a year, there was a very definite clothing size difference between my upper and lower body, and in two years, it was two clothing sizes.

One thing that’s really relevant here is the fact that I had been at a full-time boarding school since I was 11. So, seven days I week I had the same standardised meal portions, three times a day, and five days of the week we had compulsory exercise for an hour. And that diet and exercise regime was something that categorically had not changed between my being 11 with
skinny everything and 15 with fat legs. And my upper body was skinny the whole time.

That’s something that I always want to emphasise because the majority of Lipoedema patients are not as lucky as me in the sense of being able to know, emphatically, that their diet didn’t change. And in a society when you’ve been conditioned to think that fatness is always your own fault, and is always a consequence of overeating, it’s very easy for patients to accuse
themselves of overeating and decide that they have just been eating too much even when the reality may be that they’ve been starving themselves. And it can be easy for doctors to make that snap decision as well on seeing a larger patient.

Unfortunately, even though I knew that my diet hadn’t changed, I was a young teenager with no biological background or understanding at the time, so I concluded that I must be overeating to have gained this weight.

This kind of conspiracy theory occurred to me that all the other girls at school, who appeared to be eating the same as me and yet being skinny, must be somehow hiding their food and eating less and doing extra exercise privately. So, I cut down my intake as much as I was able, and added a lot of exercise….

And my legs got fatter. I ended up seeing my ribs as I lost weight from my top half, but my legs still seemed to be getting bigger. So the next theory to occur to me was that maybe I was insane, I was literally hallucinating and had body dysmorphic disorder, and I just couldn’t see my legs which were really skinny in reality. Naturally, that had me very worried about my
mental health, particularly because being a teenage girl I did ask my friends questions like, “do you see this? Do you see how fat my legs are compared to the rest of me?” Which I meant as a serious question rather than as fishing for compliments, but them being also teenage girls are tied into this social contract of having to say “oh my gosh nooo you’re so skinny!” and I really couldn’t tell what was the truth, and ultimately felt like I couldn’t trust my perceptions.

Eventually I started to measure myself around the thighs and waist, and I went for three weeks of eating as near-to-nothing as possible. During that time, I both lost weight on my waist and gained it on my thighs at the same time. By the end of it, each one of my thighs individually had a greater circumference than my waist did.

As a consequence, in my case I feel totally confident in saying that I don’t believe any dietary intervention can stop lipoedema at the time that it is developing, or indeed burn off lipoedema fat afterwards. Which feels so important for me to stress, because of course when they get diagnosed, and when I got diagnosed as well, patients keep asking for the diet they ‘should’
follow, because that’s what they’ve been trying to work out for years, ever since as soon as the disease onset. But just because it would be nice to have a dietary answer, doesn’t mean that there actually is one.

Unfortunately at that age, I had never heard of lipoedema – or indeed, any medical/metabolic conditions that could cause weight gain unrelated to diet. It didn’t even occur to me to ask for medical help at the time, because I had no idea that weight gain could be a medical issue. The takeaway that I got from my experiment was that I did indeed have fat legs, those legs were
getting fatter, and that even during the three weeks I had been living just off salad, I had obviously still been eating too much, because my legs had still gotten bigger. So from there I did end up spiralling into some eating disordered behaviours, and just flipped between extremes of weight loss and comfort eating, etc, for a long time.

I maintained a normal BMI but my legs were continuing to grow independently of the rest of me, which was devastating for my self-confidence. My attempts to make my legs slimmer just made me more obsessed with them, which meant that their size became more upsetting to me… which meant I obsessed more over them, et cetera. Before long, thinking about food and
my appearance consumed my mental energy near-constantly. It was horrible, I was depressed. Then one day when I was eighteen, my mother took me aside and said that she had just been diagnosed with lipoedema while being investigated for suspected lymphoedema. She gave me a brief outline of what it was, and for her the diagnosis was a huge relief. She had also struggled with her eating and body image since puberty, and finding out about lipoedema really explained to her what had been the fundamental problem. Receiving a diagnosis allowed her to feel that she was being taken seriously by medical professionals, that her size was not her fault, and helped her to just focus on eating healthily instead of obsessing about her appearance. She even founded a charity, Lipoedema UK, to help other women receive diagnoses and treatments for their condition.

I wish I had responded similarly maturely, but I was 18 and – rightly or wrongly – by this time, I wanted to be skinny again more than anything else.

So, the diagnosis felt like it confirmed that:

1) I would be fat forever and there was nothing I could do about it
2) When I typed ‘lipoedema’ into google I saw ‘before and after’ images of women starting at stage 1 and progressing to stage 3 over time, which was incredibly depressing because I still looked like the very mildest stage 1 images, and was already utterly miserable with my appearance
3) I didn’t have any pain at the time of diagnosis, and now I also realised that I was going to end up with painful legs like my mother’s; when I was a kid I could never sit on her lap because of her pain, so I became afraid of that
4) I might end up in a wheelchair, because of course having knee misalignment due to fat pads is a big risk factor for osteoarthritis, and obesity is a contraindication for treatments being successful. And just the bulk of the legs themselves can hugely reduce mobility
5) I now had to wear compression stockings forever which are uncomfortable, and the ones I had been prescribed came only in ugly colours
6) Finally, I couldn’t even have liposuction. Throughout my teenage years of attempted weight loss, liposuction had always represented for me a light at the end of the tunnel, and I had planned to have it as soon as remotely financially possible. Back then there was no published research (at least that I was aware of or able to find) on liposuction for lipoedema. The only thing I learned from looking up lipoedema and liposuction, was that patients who had normal cosmetic liposuction, had ended up with damaged lymphatic systems and full-on excessive lymphoedema.

As a consequence, while the diagnosis was great for my mother, it actually made me even more depressed. I think that being diagnosed was important, but I want to be honest about the unpleasantness of the experience. I gave up all of my complicated eating behaviours in exchange for just eating, all the time. Because of this fatalistic idea that I was inevitably going to be huge and disabled anyway. I really was not mentally well and I was fantasising a lot about my legs getting cut off in some freak accident, so not good.

Next thing you know I’m 21 and overweight on top of the lipoedema weight for the first time in my life, when I found that a Professor Schmeller online had published papers on giving tumescent liposuction to lipoedema patients. His paper included an eight-year follow up in which the fat doesn’t appear to return. My mother and I both signed up immediately! We were
both warned not to have really high expectations, which I think was sensible, we paid lots of money and we had the surgeries, and it was absolutely worth it. For both of us, no question. The surgeries changed everything in our lives, even things that didn’t feel like were being affected by lipoedema in the first place.

The biggest difference for me personally was that my relationship with food was healed literally overnight, and I still don’t understand how that happened. I’ve heard of people who’ve had gastric band surgery finding that their appetite problems are gone after surgery, but I’d never heard of it after liposuction, I definitely didn’t expect it, I still can’t explain it, but it’s what
happened to me. It’s not necessarily common for lipoedema patients but just as I’m giving a personal perspective, it was a huge thing. The day after my surgery, before seeing any results because I was still all bandaged up, I just didn’t want to overeat or under eat any more. I lost a lot of additional, non-lipoedema weight over the first year almost without trying to.
Which is to say that even though my legs had only ever been at a stage 1, and I didn’t think I had any trouble walking, it was only after the surgery that I realised how much easier and more comfortable it became to walk, so I walked and ran more. Looking good completely erased my self consciousness about going to the gym or swimming, and so it became easier and just fun to do those things and incorporate them into a routine. I wasn’t miserable and so I didn’t comfort eat.

I’ve lived a healthy lifestyle ever since, and even though I have gained some weight back at some times, the pandemic being one of them, it has gone on evenly all over my body instead of just the legs and it doesn’t panic me. I can tell that it’s a natural weight gain and, actually, it is even pleasant to see such a logical cause-and-effect relationship between my exercise and
eating changing, and my body changing. So mentally for me it’s been the psychological effects that are the most startling.

I appreciate how lucky I am that the mental health problems were the worst problems lipoedema gave me, because I never reached the point of physical disability and pain. Some people do propose that only severely afflicted patients should get treated, but I can’t emphasise how important I think it is for young women to be able to have surgery too, as not only are they also suffering, but surgery is such an effective preventative for all of the problems that we otherwise later see in women.

Whenever I see women at conferences who have suffered for decades with this condition, and ended up requiring additional treatments like analgesia, counselling, gastric band surgery, antidepressants or joint replacements that are available on the NHS but don’t actually treat the underlying cause, when that’s known to be lipoedema, it’s just an incredible relief that for me all of that was prevented. The fact that it’s family money that made the difference, while it’s lucky for me, it simply isn’t fair. From a financial perspective, I truly believe that treating patients early really will make a difference to their life, including their overall lifetime burden on the NHS.