Updated: May 21, 2021
One of the difficult things about lipedema is pinpointing where it started. For most of us, it started far before we knew, often only becoming apparent in hindsight.
When you have lipedema, you may be very thin for years and attribute the weird texture on your slightly larger thighs to cellulite. You have kids and get older and you think that the wider hips and aches and pains are because of childbearing and aging less than gracefully, and you go on. You exercise and eat healthier and ask the doctor why you can't lose weight and you're told that you just need to eat less and exercise more, and so you make your heavy legs take you around the block one more time, or make your extra large arms fight to do one more push up, and you give up more and more of the foods you thought were healthy, but aren't making YOU healthy.
And then one day you wake up, and you are THERE. At the place where women all over the world find themselves. At the end of the "answers" with only questions and a body that does not respond to a single thing any nutritionist, any doctor, any overbearing mother, any super helpful BFF, any caring spouse has ever insisted upon or suggested. Late at night the tears come from the feelings of defeat and failure. Or maybe they come like mine did, in the back of the closet while you're trying to figure out if anything you own will both fit and make you feel less hideous.
You've begun to hide. You hide in small ways, like always putting your child or your pet on your lap for pictures. You stop wearing cute clothes and opt for those that cover the most or camouflage the best. You hide in bigger ways, like in the dark when your husband reaches out and you pretend to be asleep, sure that he can't really still want all that your body has become. In your hiding, you breed shame and guilt and fear and hopelessness.
And THAT place is the place so many, many women are in when they discover they have this disease. A disease with no cure. A disease most doctors they will ever encounter have never heard of. A disease that has robbed them of so much, yet also explains so many things about the journey they've been on.
The question is, from that place, where do you go and what do you do? Do you continue to believe the voices, both real and imaginary, that have played over and over in your mind for years or do you decide that this disease isn’t going to win? When it adds pounds and pain or subtracts activities you mourn, it doesn’t have to win. You can start to make changes. You can tell those voices to shut up, once and for all. Because while you are a woman who has lipedema, you are so much more. You may never know exactly where this started. And if you believe the experts, it probably will never end. But every day, you can make the choice to take the next step, a new step in this difficult journey.