A day in the life of someone with lipoedema (A chronic fat disorder)
Elizabeth Toomey shares her story of living with Lipoedema with MoD
Hey, my name is Elizabeth but I normally go by Lizzie. I am a 21-year-old university student from the UK studying history. I'm pretty much like any other 21 year old my age but I live with a condition called lipoedema.
Lipoedema is a rare adipose fat disorder; in essence, what this means is that there is an abnormal build of fat cells in my legs, thighs, bum and for some women, it can also affect their arms. This abnormal or lipoedema fat usually tends to start at a point of hormonal change such as puberty, pregnancy or menopause. For me, I noticed symptoms at around 12- 13 years of age when I was put on the pill to control heaving bleeding during my periods. In some cases, there's a family history of the condition, but for me, I'm the first one in my family to have lipoedema (lucky me!)
Normal Fat v Lipoedema Fat
There is no cure for lipoedema, it is a chronic and progressive disorder that can only be managed through compression stockings. You can get a procedure done called tumescent liposuction, in which they remove the lipoedema fat from your legs, but this is an expensive surgery which cannot be done on the NHS as its considered 'cosmetic' even though lipoedema has been named the 'painful fat disorder.' Yeah, I know… anyway, if I wanted to have the surgery I'd have to go privately and pay an estimated £10,000 upwards, and as a student let me assure I do not have that kind of money lying around! It's a condition that affects an estimated 11% of women in the UK. It is a rare condition and getting a diagnosis can be difficult as many medical professionals do not about lipoedema and often confuse it for obesity!
Let's clear that up actually. Lipoedema is not obesity there are many differences between the two, the main one being that those with lipoedema will have a disproportionally smaller top half of their body to their bottom half. For example, size 8 top to a size 18 jean. If you're reading this and thinking why doesn't she just work out or lose weight if it was that simple I'd be throwing my money at gyms and diet plans. As lipoedema fat is not caused through an unhealthy lifestyle it can be gotten rid of through active and healthy living. It's a common misconception of the condition and leads a lot of women feeling hopeless as no matter what they do they can't lose that bottom half of weight. I encourage anyone reading if you feel like you can relate to anything in this blog, research, seek medical help and fight for a diagnosis. I was 12 when I first started going to the doctors about lower leg pain and despite being a perfectly healthy weight I was told to lose weight and come back. This happened for eight years until a doctor looked at my legs and said "Lipoedema" at this point, of course, my progressive disorder had progressed and I am now what medical professionals would call stage 3. So I urge you, if this blog has any resonance with your life please go to your doctors. Lipoedema can become a debilitating condition, causing immobility and other health issues, early diagnosis and intervention are key!
Stages of Lipoedema
Medical stuff out, thanks for sticking with me through that!. Let's start with a day in my life.
In the mornings, the first thing I do is put on my compression stockings. I don't sleep in them as I find them uncomfortable at night but a lot of women with lipoedema do. Some morning I don't put them on first thing as its just nice to get up and not think about it. I then have to find an outfit. Shopping with lipoedema can be hard at times. Jeans are especially difficult. Having a smaller waist to leg ratio makes shopping a disheartening experience and I struggle to find things that fit. Over the years I have collected some items that do fit, are age-appropriate and go over my stockings which is key. I then go about my morning with breakfast and getting ready for the day, usually lectures at university.
I try not to let lipoedema affect my life too much. I have a job as a nanny which I love, but it does involve a lot of walking as I don't drive and I have to keep up with the kids. I also workout during the week. Working out with lipoedema can be difficult as it can cause a lot of pain, but being active and keeping the non-lipoedema fat off is important to me. I try to do workouts that are low impact as I have arthritis in my knees due to the lipoedema so the lower the impact the better my pain management. Being active is important to me. Lipoedema can cause mobility issues. I find walking incredibly painful and public transport really stressful, getting in and out of seats on a bus can be difficult and sometimes embarrassing. Having bigger legs and hips makes me paranoid about squashing the person next to me or having to move past them to get off at my stop. It's more anxiety-induced then caused by my lipoedema but its something I face daily. So keeping fit helps to reduce my pain when walking as well as reduce my fears of being judged on public transport.
Pain management is a big part of my daily life. I do a few things to help with this. Pre and post-workout I use to a vibration plate. This helps to circulate blood flow and loosen up the tissue around the lipoedema fat. They are a great investment and I would recommend that any women with lipoedema should try and invest in one. I first used one at my local gym and found that they were a great help. I also use a CBD spray which I was really sceptical about at first but does have a great impact on reducing my pain. I also have an inflatable leg rest which I use to elevate my legs when they have swollen. Another great investment I recommended. You can get them for fairly cheap on amazon. Many women with lipoedema follow a keto or RAD diet which helps inflammation and can reduce pain, but as you can imagine, as a 21-year-old university student following that kind of diet can be difficult as I like going to clubs and bars and eating out on occasion. I try to eat the best I can, I am a vegetarian so a lot of the food I eat is anti-inflammatory anyway but not all the time. I do find that after a night out, especially with heels on I pretty much have to write off the next day due to pain. Its something I have to manage, but being social is important, especially in university.
After a day of wearing compression, I have a shower or if a have a bath I use magnesium flakes which help relax my joints. After that, I then dry brush my legs. Dry brushing is a technique that helps to detoxify your lymphatic system. This is important as lipoedema can affect your lymphatic draining system which makes it difficult to remove extra fluid from your legs. I then moisturize my legs. With lipoedema, the skin texture on our legs is thin and prone to bruising. Its really important to keep the legs soft and supple, especially with having to wear compression. I also use magnesium gel which helps with my restless leg syndrome, yet another co-morbidity of lipoedema. I then relax the rest of the night until bed.
Life with lipoedema is pretty normal to everyone else I just have to make a few adjustments in my day to day life to manage my condition. There a lot of issues that many other women with lipoedema face such as poor mental health, ability to exercise, romantic relationship, struggling relationships with food and their bodies. I am fortunate enough that these issues have not affected me to the extent that they have with some women have. Lipoedema is an all-consuming condition and as mentioned before I highly recommend that anyone with symptoms researches and reaches out to medical professionals or other women with the condition to find out more. Early intervention is key to slow down progression!