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LIPO – WHAT?! A diagnosis backstory – on the quest for a pain free life

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So, in my last blogpost, I’ve mentioned that surgeries happen.

Today, I wanted to tell you a bit more about that part… I promised a story, didn’t I?

Well, to start, I am sure you are familiar with the fact that I have Multiple Sclerosis – but as fate wanted, I was given many gifts from the chronic illness gods. (In my next incarnation, I promise to stick to collecting stamps – not illnesses! I promise.)

Anyway, the thing is I had surgery for a condition, many people – and sadly often healthcare practitioners – are seldom aware of: Lipoedema!  In fact, when I received my MS diagnosis, I thought I would have the key to all my ailments and an explanation for all! But nope, that is not the way it works with chronic illness, I had to learn the hard way…

Let me explain. I’ve always had a very feminine body type – small waist, wide hips and thick thighs. But something was just not quite right. I usually wore a small or extra small on top and large/extra-large on lower body. In hindsight I know now, that it was the beginning of the disease.

This might not sound too bad – but as usual, there is more than meets the eye. My legs were easily swollen and heavy, with bruises here and there at the slightest touch. My arms were a tiny bit disproportionately large.  At that point I thought just eat less, exercise more – but that traditional advice just made the disease worse – leading to mental health challenges along the way. Honestly, who would not get frustrated if they do everything supposedly right and things only get worse? The worst part of it all is this is sadly not only my story – according to the few statistics approx. 1 in 10 women have lipoedema.

Lipoedema is a fancy word for a horribly painful disease causing the abnormal build-up of subcutaneous (directly under the skin) fat tissue in the limbs and depending on disease progression some other body parts. It mostly affects women – and men only in very rare instances.  Scientists suspect that it has something to do with female hormones but, nobody really knows where it comes from or what causes it, except that it seems to have a genetic component. Like MS, it is a mystery disease, but at least you can cut it out. When I found out that I have lipoedema, I was already in a very advanced stage. And the next stage would include irreversible secondary lymphoedema (that is swelling of the body due to the lymph system basically collapsing).  For me, there was no way in hell that I was going down that road. I will never, in my life, give in to either one of my conditions, sit by and as the forest of my body is on fire and struggling to keep up. (Stage 3 Lipoedema further limits your mobility and is a very stigmatizing disease – often confused with obesity.  Making the victim the perpetrator.)

Keeping this in mind – as women are mainly affected – the health inequalities and societal inequalities come to light through the condition. Similarly, to observations made by Maya Dusenberry, I have seen women with lipoedema experiencing chronic pain being dismissed where men would have been believed “and that respect is something women are not given” (Doing Harm,p.189) or that “doctors too often can’t see behind some aspect of the patient’s identity leading to patient’s symptoms dismissed as ‘normal’ for their ‘abnormal’ characteristic (p.243)” as their body type i.e.. What is more worrying is the attribution and fixation on women’s bodies with regards to their weight? I was once advised to lose weight regarding the lipoedema fat pad on my knee – the doctor was extremely surprised when I told him that pad was already there in my teens and will surely not go away with losing weight. It was a prominent knee specialist who sees hundreds of women– with no knowledge of lipoedema! To be fair though, back then I did not know about the condition either – but a knee specialist? I could have had the referral much earlier but, instead I had to go on a and through diagnosis quest until I found someone knowledgeable.

Still, this did not happen while I was taking control over my diet but only when my new partner was confused about my eating proportions and why when playfully touching my arm, I got mad and asked him why they were purposely hurting me. He was flabbergasted.  It should not have hurt. And at that point, finally, I realized something was off.

For me, it was an incredible coincidence that I came across an awareness campaign around lipoedema running online at that time. I was shocked – seeing my body shape in several women. I finally understood why things were happening the way they were. It was not just a slow bloody metabolism or my hypothyroidism. Nope it was something entirely different. All I knew was that it was Lipo-something and it was definitely NOT MY FAULT.

It was NOT MY FAULT.

I took so much inappropriate responsibility and judgement – maybe even unconscious resentment? – towards myself for the condition and its effects, like so many other women do. And honestly, how could it be any different? We are bombarded with diet culture everyday – or with messages like “how not to gain weight during quarantine”. I mean people?! We are in a national crisis and all some tabloids are thinking about or dwelling on is the size of people’s bodies instead of their mental and physical safety? This ultimate focus on the body from society maddens me inside – the pure objectification instead of cherishment of the body. The physical aspect of ourselves through which we connect to our surroundings and environment. The very source of our being in this world. We are meant to do so much more with our lives than to fit into a size zero – we are meant to live life fully! To enjoy, to play, to dance – to simply be!

Back to the topic – me finding out about Lipodema!

After hours of researching the condition, I decided that I would have surgery performed. This decision was not taken lightly – but I knew that it would be either Lipoedema or MS that may take my mobility from me, and that is something I would not stand for. Whatever it takes. I already saw what happened to my grandmother (she struggled to walk in the end and had to use a scooter to move freely) – and I would not let that happen to my body. I deserve health, I deserve safety, I deserve being free from pain. And so, does every woman affected by this crippling condition!

I know many who are not affected by lipoedema may not grasp to wide consequences this disease has on our quality of life and disability long-term – but that is a privilege the affected do not share. Please believe us when we say we do not want to live with the chronic pain, please believe and support us – we need you to. When we go through surgery, it is not for our body to fit into society’s beauty concepts of the century. That is a pretty poor assumption to make and shows backward thinking – as if the female body only exists to appease outsiders. No, my body exists for me, not for you. And surgery is there to remove diseased tissue causing numerous health issues.

Knowing what I have been through with MS, I was sure I would be able to manage a few surgeries. I mean what is the worst that could happen? Numbness? Been there, done that. Thank you MS, you have prepared me well for this challenge. Pain? I was already in pain caused by lipoedema which has progressed into severe chronic pain by September 2019. Check. So, for me, there was nothing left to lose. But surgeries are not all fun and games as I would have to learn…

More about this soon.

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Susanna van Tonder

Susanna van Tonder

Susanna van Tonder is a prominent figure within the patient community (national and international) where she fulfils various roles within charities whilst raising awareness and advocating for the right of people with disabilities. She pursued her studies in social sciences. Her peak interest in health, social justice and social engagement was caused by her own multiple sclerosis diagnosis and since then she has won a youth reward for her advocacy work, has been present at several events at the European Parliament and featured in newspaper articles. In Luxembourg, she is a part of the board of Multiple Sclérose Lëtzebuerg. In addition, she joined the Higher Council for People with Disabilities in Luxembourg in 2019.

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Hi, i loved and connected with what u have written. I have lipoedema, still searching for a doc to get diagnosed. Every bit that u said about lipedema, body as a being much more than just a beauty object, resonated with me. God bless u. Keep writing

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