I recently found out something shocking and validating about my body. I have Lipoedema.
Even though you probably never heard of it, (I hadn’t) 11% of women have it. And I am betting about 10% of them have no idea.
Growing up, the girls in my family joked/lamented that we’d inherited Faculjak thighs. Large, holding lots of weight, heavy and they got bigger and heavier with age. Easily bruised and lumpy. In fact, all my aunts and my grandmother on my dad’s side had these. Not fun for hot summers, wearing shorts or hearing comments about thunder thighs. I’ve spent most of life covering them, worrying about them and being embarrassed. Instead of bad luck, we have (and had) an actual thing that was not our fault – lipoedema.
It’s not normal fat. It is special. Lipoedema is a chronic medical condition characterised by extra fat in the legs and arms. It can cause pain, swelling, and easy bruising. And it can sometimes have an unusual texture within the fat that can feel like rice, peas, or walnuts beneath the surface of the skin.
COOL, right? No.
It gets worse with every hormonal change – puberty, pregnancy, menopause. It is often mistaken for obesity. Doctors often have never heard of it, and give the bog standard advice to eat less and move more. (Duh) Regular diet and exercise do not change it. Lord knows I have tried.
One thing does help – liposuction.
I always thought of lipo as an extreme vanity surgery. While it may be (nothing wrong with that, I am perfectly vain in many ways) for me this was about mobility. Because I’ve been dragging my heavy limbs through the decades and manically exercising them in hopes to slim them, I now have osteoarthrosis in my knees, making easy things like walking hurt, and harder things like running, impossible.
After thinking, researching options, watching my legs get bigger despite my diet and exercise efforts, I decided to do the scary thing. In April 2019 I had 7.5 litres of diseased lipoedema fat hoovered from my inner thighs and knees to lighten the load.
This is what I learned during my recovery as told to fellow coach Anita Patel, who had lots of questions.
How did you feel when you knew you had to have a little down time?
I love lying around. A book, a podcast, Words with Friends, a soft spot and a hot drink and I am happy. So, the thought of enforced rest with my feet up sounded like heaven! And I planned. I had my two primary school kids farmed out to the grandparents for a week, the husband was going to be my nurse. Quiet days to myself to heal. Ideal!
Once you’d had your operation and you were actually resting how did you feel?
I was okay for first few days as there’s lots of wound management, compression garments, leakage and constant staring at my legs. It preoccupied me. After a few days though, it was boring. I was bored with myself, with my legs and with the resting. I missed doing things and I missed people.
How was day one? What did you do?
I had local anaesthetic for the procedure and it hangs around for a few days, so the pain was not too bad. I pottered from couch-to-couch, napping and hypothesising about the final outcome of my legs. I leaned heavily on social media for company. Which was, unsurprisingly, energy zapping.
What values did you noticed were honoured or trampled on?
Connectedness. Being needed. Relationship. I was lonely! Every time I think I want to be alone to revel in solitude it backfires, and I miss people. I need to connect, or I am untethered.
How important was it for you to have this procedure?
I felt this was absolutely necessary for me. I have young kids. I want to be mobile. I want to stop it from getting worse. I was scared, and I was excited. I wasn’t expecting model legs, just lighter and easier and more “normal” ones. The thought of things getting worse was unacceptable. Since the lipoedema fat doesn’t come back to the original site after liopsuction, it felt like a really smart answer.
What did you learn about yourself during this process?
1. I only like lying around when it’s an option
Too much alone time makes me blah. Being blah makes me feel depressed. Feeling depressed makes me eat snack food. Eating snack food makes me feel gross. Etc.
2. Being vulnerable is easy to talk about and hard to do
Letting someone take care of you is humbling.
3. My body heals
I am grateful this was elective, temporary and in the aid of my greater health. I got a tiny taste of being out of the game and how hard it must be for folks with chronic diseases or who are getting treatment for serious illnesses. All I wanted was to get back to normal. Normal for me was a few weeks away. I am lucky.
4. The things in life that make me groove are a delicate balance of being needed, being alone, being with friends, being in action – take those away and it’s not pretty.
5. My legs are not the enemy
My 6 year-old LOVED my big squishy legs because they were soft and cuddly. She alone helped me see them differently. I value their resilience despite all the years I was mad at them. They are strong. They carry me. Perspective is kindness.
What advice do you have for others having to rest after an operation?
• You may not want to do the things you imagined – be flexible
• Don’t expect things to feel normal. You are sore, tender and don’t feel great. You’ll not be running around taking care of things you normally do. It might irritate you to let it go. Things around the house might run differently. Or not really run. And it is actually OK
• You might want company. You might not. Roll with it. Ask for what you want
• Have a trusted intimate partner or close person look after you. You are very vulnerable for a few days and the help needs to be tender and loving
• Lean into it. No rushing the body. It knows
• Follow your doctor’s orders. Unfortunately.
What did you miss the most?
Until four years ago I doubt this would have been my answer, but I really really missed exercise for my mental, physical and social health. Hard, sweaty, sweary effort that makes me forget everything for a while. Without it I feel pent up and looney.
What didn’t you miss but thought you would?
Clothes! I am still wearing compression leggings and I’ve found it liberating to not think of outfits. Now I just throw on a dress over the leggings and boom – done.
The swelling is real. It takes six months to a year (!) to see full results but I can already feel the difference. I am lighter on my feet and a friend told me I was already walking different and my gait had changed! I am excited to return to exercise and carry on doing my thing, albeit with less pain and more pleasure.
If you think you have lipoedema, or know someone who does, visit lipoedema.co.uk for more info.
Professional Life Coach