By Denise Bennett:
The most powerful words I heard in the months following my introduction to and diagnosis of Lipedema were, “this is not your fault.”
I heard them for the first time during a pre-appointment interview with a doctor’s office that I was hoping would agree to see me for a diagnosis. It took my breath away. I waited for nurse to tell me I needed to lose some weight before setting my appointment. Those words were never said, and in fact, she said, “you are tall and skinny.” And then she said, “this is not your fault.” A tear slid down my face. One single tear.
A few weeks later, when I was at that medical appointment, the doctor took one look at my legs and said, “you have a classic case of Lipedema, it is important for you to know that this is not your fault.” Again, my wounded, battered soul felt as if a tender kiss had been placed upon it; and before any talk of treatment, the healing had already begun.
But a lifetime of messages from doctors, parents, magazines, gym teachers, diet gurus, and others, is hard to move away from. Within a few weeks the glow of that “this is not your fault” message began to dim, and I starting questioning whether I could have stopped Lipedema from happening.
Am I speaking to your heart right now? Are you feeling that somehow you had something to do with your legs getting bigger and out of proportion with the rest of you? Are you feeling that the painful tender legs that you have been carrying around with you for ten years, or twenty years, or thirty years, or even longer, are your fault? Let me tell you what I have learned.
There seems to be a genetic predisposition to Lipedema. I wish I could tell you exactly what that is, but to date, no one seems to know. A lot of research is being conducted right now, as you read this, that will hopefully provide more answers in the years to come. What we do know is that many mothers, daughters, aunts, sisters and grandmother’s share this disorder. We learn from them that our bodies are “just shaped this way”, and that becomes so embedded in our minds that perhaps we often don’t seek answers as we would with any other disease. Then, when we do seek answers from most medical professionals, we are told to lose weight, or that we are told that we don’t exercise enough, or they tell us that it is just the way we are built. Many of us have been put through a variety of tests, all to no avail, as the results indicate there is nothing wrong.
Many factors contribute to Lipedema. Recently, at the Fat Disorders Research Society (FDRS) conference I attended in Dallas, Texas, I learned that there is research being done on the vascular systems of women with Lipedema, specifically, the capillaries. Leaky capillaries may be responsible for the changes that occur in the normal fat cells in the body, resulting in enlarged fat cells in the legs, arms and even the abdomen in later stages. No one has all the answers yet, but the evidence thus far seems to confirm that this is not your fault.
The truth is there may be ways to stop the progression of Lipedema. Some women, if properly diagnosed and educated, keep their condition from advancing to Stage 3 and Stage 4 through dietary changes, supplements, and other conservative therapies. If you have been diagnosed with an early stage of Lipedema you may want to investigate these options.
Really though, why are we so vulnerable to the “whose fault is this” mind set? What good does blaming ourselves do? Use the knowledge, if you can, to free yourself from shamefulness. Show your legs. Tell others about your battle with Lipedema and with getting diagnosed and treated. Be open. You’ll be surprised how shame seems to disappear when you shine a little bit of light on it. And if you inherited this condition, and you can connect the dotted lines to someone in your family, talk about it. You may just save a life in the process… yours and theirs.
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